As part of your treatment were you ever refe... - Vasculitis UK
As part of your treatment were you ever referred to a Clinical Psychologist If so did you find it helpful? please make appropriate comments
Suzym2uModeratorVasculitis UK88 VotersPlease select one:
Never referred to one. Referred to psychiatry though (even though main doctor agreed with me that medication wasn't the answer). Tried asking for a referral to psychology from him yet still no luck.
No was never mentioned to me
I was referred to one at John Radcliffe because of pain from erythromelalgia. Had assessment with great lady who used mindfulness and waited and waited and waited. She has left and don't know if new person in post. This almost 2 yrs ago!!
The psychologist was useful in that she gave me psychometric tests which were helpful in confirming my cognitive issues with words (but not numbers). I was very reluctant to go for the first 2 years or so after my diagnosis of primary central nervous system vasculitis as I thought the results might preclude me from continuing to work. Ultimately they did as the testing showed further deterioration over time, but as my neurologist said, it is what it is.
I very much disliked two chats I had to have with a professor of psychology so that I could be cleared of any psychiatric illness. I was cleared but his report contained a number of factual errors, including it being written by reference to psychometric testing that he thought was current but which was 2 years old).
No never referred, but have not been referred for a lot of issues I have from wegeners! I had a particularly low point before Christmas as I have been very much house bound, due to not feeling able to drive safely, the fact I am unable to walk very far because of nerve damage to my feet and general stamina issues. I went to a therapist for one session, which did help me come to terms with my life as it is now, because my experience, has been completely life changing and not in a good way. I don't think people completely understand how much this disease impacts on your life, you go from being a hugely active member in your family, work etc to becoming completely vulnerable and dependent on others and this is very difficult to come to terms with. I find it difficult to read and concentrate, writing is hard because my hands shake, sitting at a desk is extremely painful as the pain in my feet makes it feel like I am standing on knives! The foggyness in my head is awful and I struggle with stressful situations all things I used to do without even thinking about. I have a constant pitch of a car alarm going on in my head due to tinnitus, a result of the wegeners attacking my ears and sinuses, it feels as though my head is vibrating it's so loud. But I try to keep positive, it is just a shame this disease is not given more recognition for the impact it makes to lives!
I was diagnosed with Wegeners 9 years ago, & although it was explained that there was no cure, I was led to believe that treatment would put me in remission, and then managed, and that although there were side effects from the medication, which could be as bad as the illness itself, that within 2 years I should be tapered off all medication. This unfortunately has not been the case, and I have never been fully in remission and had a few flare ups. This has resulted in increased medication which has impacted on my mobility. I agree this this can be a life changing illness, and like you I have gone from being a very active person to someone who finds life a struggle & challenging at times. I realise it is very difficult for Doctors to predict exactly what impact the illness will have as it affects people differently, and my experience has been that one day I will experience pain/symptoms in a particular place which disappears the next day.
I was referred to a clinical psychologist before I officially got my diagnosis by Occ Health. It was a very difficult time for me as at the time there was a suggestion that my illness was " significantly psychological ".
I found her help and support invaluable, she helped me come to terms with my illness and I could discuss things with her that I wouldn't want to say to my very supportive Husband.
With her help I managed to cope with the loss of my job ( a career which I loved ) and driving licence, I dread to think what state I would have been in without her help.
I do wish that more patients had access to psychological services and support, to be diagnosed with a chronic, remitting relapsing disease can be life changing. I have gone on to build a life for myself, very different from before but still with value and meaning.
Was not referred but in retrospect I do wonder if it might have been useful?! There are psychological aspects of WG / GPA which are not immediately apparent, probably because you are trying to get a diagnosis and are particularly relieved when this is delivered. However there are long term effects of the condition which will not go away and assistance early on in learning to live with these would probably have been useful.
Never knew anything about it
I knew I wasn't coping well and asked to speak to someone but my Rheumatologist refused and said "it's just Pred side effects, you'll get over it as you taper". I knew he was wrong but didn't have the mental strength to argue my case.
20 months after diagnosis I had a heart attack and the Cardio Team immediately recognised my need for support. I attended Cardio Rehab which apart from controlled exercise, included talks and relaxation classes. I also had 6 one to one sessions with a Phychologist and his support and advice were invaluable.
During our sessions I disscussed with him my long term issues that started after the Vasculitis diagnosis; the medication, lifestyle, work and relationship changes and we both agreed that I should have been offered help then. I suggested to him that his hospital team discuss with all consultants (not just Cardio and Oncology) the needs of the patient who has been given a life changing diagnosis of any kind.
No I haven't been referred to a Clinical Psychologist
The idea has never been suggested. Fortunately, however my vasculitis has no effect on my daily living apart from having to attend clinic more or less frequently depending on flare ups, so I see no need.
I believe the department I attend has a clinical psychologist who specialises in vasculitis and other auto-immune diseases.
Not been referred to one - might be an idea to refer my rheumy to one though lol.
No I have never been referred to a Clinical Psychologist.
No never been feferred !
I saw someone who was principally for dialysis patients; It was very early after my vasculitis diagnosis & frankly, the guy was extremely Unhelpful & dismissive. I'm sure there are much better people out there but his 'bedside manner' was poor. I think however, he wasn't overly keen on a)Americans, which I am or b)people who aren't elderly women, who I'm sure just adore him!
No l have not... it would probably be helpful but I feel like I go to so many appointments now, I am not sure I want any more... seeing four different doctors also blood test and chest x-rays and cats cans etc.
No but on 3 occasions I self referred for mental health counselling through my GP and a scheme run by my employer which was Airedale hospital. That was because I had been told I wouldn't walk again
I found the help I received invaluable as I had suffered cognitive impairment s including anterograde amnesia and they not only helped with comprehensive memory testing but helped me to learn coping strategies harnessing mental skills I had acquired prior to my illness (CNS vasculitis).
These sessions helped me move on with my life much more positively and constructively. Some of their reports also helped in my ESA tribunal by giving proven medical evidence to cognitive issues not seen by the basic atos testing and the naked eye ... always a big problem area with any disabilities linked to mental health.
I will always be very grateful to the team of professionals who worked with me during this very challenging and frightening time.
Never referred or offered one !! That option was not available on your "survey".
You could tick no 1 option it covered both
Im useless at stats and surveys but I think there is something a little wrong with how this survey has been set up and that the results will be meaningless (albeit the comments underneath look very useful).
There is only one choice, "yes, extremely helpful" and therefore you know for certain that the whole circle will be blue and stay blue regardless of how many people answer (so long as at least one person answers).
Its like a cat food manufacturer doing a survey where the only choice is "I love whiskers", in which case 100% of those who responded are guaranted to record that they love whiskers.
I think you need at least two options but more choices would make it more sensitive in terms of representing people's actual experiences.
Sadly Health Unlocked have not included all the voting options or the votes which is very annoying as they did include them all on the very first day. I have written an email of complaint but we may have to start again. 😔
I was not directly referred by my healthcare team, though it was mentioned to me that I can set up my own appointment, that I did not need a direct referral. After many months of struggling to come to terms to a new situation, I have called for the initial intake interview and will perhaps get to see a counselor/psychiatrist soon. I hope it helps.
