I made a brave decision and asked for my care at guys hospital to be handed over to Kings College Hospital.
I must stress that the doctors at guys have been amazing and have helped me to get here today. I had to make this decision because the appointments were too far apart due to being under a world renowned specialist and his services were stretched. I felt that for my children’s sake and my own sanity I needed to reach out somewhere else.
My first appointment was great and almost 2 weeks ago. I now have my next appointment next Wednesday. This is where I need to be, my illness is still acting like a blooming jack in the box!!!!!! Just don’t stay down 😂
Anyhow blah blah blah I noticed this on the back of my appointment letter and I felt pretty emotional. People are starting to listen, people are acknowledged the impact these illnesses are having on us and people are wanting to hear us to be able to help us.
I thought this questionnaire was a reflection of everyone’s hard work in getting our symptoms across and raising awareness. I’m so tired but I really wanted to share this with you all
Xxx
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Lisalou19
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Oh yes Lisa, this is so heartening about changes in Rheumatology that are badly needed on the wellbeing side!. I certainly don't get asked at mine about quality of life and it all has a bearing!.Having said that maybe I suddenly will tomorrow at my appt. Wouldn't that be funny?. !. Thanks so much for sharing and I'll be keeping fingers tightly crossed you have a great appt next week. Badly needed and you were very brave to move hospitals so I hope your rewarded with a good treatment plan. Keep us posted. Xx
Funnily enough Lisa, my Rheumy did ask more about how things were generally something they don't really do so maybe times are a changing in Rheumatology!. Let's hope so and your next my dear for a helpful appt. will think of you loads. You've got it too!. Xx
Hi Lisalou, I am so glad to read that you took the pro-active approach in your care. And sounds like you are being treated faster.and realistically. Refreshing to see that listening,caring, understanding and countless hours of hard workings are being noticed.Quality of life,one of all our greatest achievements. I hope you get on there, and you keep moving forward with your health. Good news this is for many! My best to you going forward. Peace, and blessings thestormy sunshine
I’m delighted for you and of course it is good for all of us with biomedical diseases to have our psychological welfare and wellbeing taken into account.
Indeed i hope this approach becomes the norm for all of us with rheumatic diseases or rare conditions just as it is for cancer in many places. However we need to bear in mind that it’s the large cancer charities and volunteers funded by endowments and membership who mostly offer emotional support to cancer patients. Similarly Lupus UK, the BSSA and NRAS need us to support them as much as possible with memberships and fund raising so that they continue to offer helpline support as well as research.
I’d prefer my doctors to focus on getting to the bottom of my physical wellbeing than my emotional wellbeing. And I see fatigue as part of a systemic process for myself - not a psychological aspect.
Having been referred by my neurologist for psych assessment for “functional overlay” last year I’ve become very wary of hospitals ticking the psych wellbeing boxes - especially because doctors and departments now get paid to diagnose functional disorders, a researcher friend explained to me.
And as functional overlay can be diagnosed while overlooking that an existing disease is actually very active and is causing the fatigue and extra neuro symptoms and that inflammation is also impacting psychologicallly on the patient - I’m also rather concerned by this newfound interest by hospitals in our emotional wellbeing.
I hope I’m wrong to be cynical but I am concerned that the back of your letter may possibly not be all that it seems.
So just to add a different perspective on Kings and their motives for this interest in our wellbeing in providing online CBT for patients - I thought this investigative journalist’s virology blog might be of interest. Xx
Not sure I share your views here. Surely if medics are starting to see a pattern in patients that mood is low or that we are all complaining of the same symptoms we find hardest to deal with they are seeing a gap in current treatment.
The last dermatologist I see 2 weeks ago quite honestly told me, people like me who are complicated , we no longer focus on the label we focus on the symptoms and treating those.
I don’t feel this questionnaire is in any way passing us off to the “functional”’”mental labels”. I think rheumatologist now know we are fragile and certainly wouldn’t line us up for a point blank shot in the head.
I’ve never been asked by a rheumatologist how life disabling my illness is. I honestly feel that now we are beginning to get heard.
Unfortunately TT, I’m sorry to say but if you expect the medical profession to diagnose something that is causing all your symptoms, you are lining yourself up for a very depressive life lost in a battle that no one will win.
Medically unexplained doesn’t mean it doesn’t exist to you or me. It just means they don’t have the tools to give us labels.
Rheumatoid illnesses are normally associated with joints and skin. Now they want to improve our wellbeing, because they now acknowledge that pain, fatigue and low mood are major symptoms for us
Well I don’t know how long you’ve been under rheumatology for LL but I’m now in my ninth year under this specialism and in my 56th of living with autoimmune diseases.
And I’m a passionate campaigner for awareness about the impact of rheumatic diseases on our heath and wellbeing and also very much a believer that everything is organic and our minds should not be separated out from our bodies.
So far I have been under the care of 6 rheumatologists, 2 vascular medicine doctors, 3 neurologists, 3 gastroenterologists and 1 endocrinologist over the past 9 years - plus oral medicine and ophthalmology. . I have also served as a trained volunteer for the UK RA charity and have been an invited guest speaker at a rheumatology Congress about my own patient experiences as an islander depending on telemedicine. I have also just retired after 7 years serving as a voluntary public representative working to improve NHS Scotland.
So I’ve been privileged to be able to discuss and awareness raise as a person with lived experience and have also sat on groups and boards and listened hard to doctors and health economists speaking about new technologies and approaches and pathways for patients with both acute and chronic conditions.
I did have a few years of counselling from a charity that has now sadly folded because the NHS and council withdrew their funding. I’m awaiting ACT for my physical conditions after psych assessment. So far it’s been 7 months and I’m told the wait will probably be over a year.
So my somewhat jaded views are based on all of this experience plus my own family history. Apart from my ophthalmologist last year, I have never yet been asked by a consultant how my various conditions impact on my mental health. I have however had several doctors presume that some symptoms must be psychosomatic overlay and had to fight like mad to convince them to rethink this and retract their related diagnosis.
What I do know is that I like my doctors to appear to be aware that any chronic illness will impact on our lives both practically and emotionally . But this doesn’t have to be discussed or expressed unless I choose it to be.
I’d so much rather they focus on listening to me and treating my physical symptoms with respect - and a measure of kindness is a bonus. But I would so much prefer that they trust that I will mention depression and other emotional impact if I feel it’s relevant to my case.
I have seen and been through too much over a lifetime to trust the NHS to use this information about my emotional wellbeing in a way that will enhance my overall care.
I do like and trust more of my doctors now than I have done in the recent past but I am too badly bruised and battered now by medical PTSD to do anything other than put on a cheerful face for them no matter how kind and nice they are to me. So it seems counter intuitive to appear stoical and alert during consultations - as many of us do - but then to fill in questionnaires describing the opposite? Who will read them and what decisions or agendas might they be used for? I know too much now to trust researchers I don’t know to use this information for the overall benefit of patients as they claim.
For emotional support I would always prefer this to come from fellow sufferers here and related charities dedicated to improving the welfare of their patient groups, rather than from my doctors.. Just my perspective of course but I think the link I posted explains why I’m inherently sceptical these days? X
I don’t even want to go over my journey because it does send me over the edge. I’ve been sent to places mentally that I never want to visit again.
I’ve literally been passed around the nhs like a balloon that is not allowed to touch the ground. Passed from one to the other because the one had no answers. I can not explain the stabbing feeling of every time I was referred onto someone new.
So I get it, I really really do. I still at times can not walk through my own front door to my children because I’m sobbing due to the realisation of the years wasted,
So for me TT, I honestly believe that for rheumatologists to now open up to our well being is a massive hurdle for future treatments. Imagine how much better we would both fair if we was treated from the off based on symptom???? Without all of this merry go round stuff. Maybe me wouldn’t be totally ok but I reckon our overall well being would be way better than it is now.
You know I can’t do a lot of things now with my children which is heartbreaking but this is the hand I’ve been dealt . Oh and I pee myself daily 🤦♀️ But hey I’m still here
LL I know that, like most of us here, you’ve been through a lot and for a long time. And I realise my own life and NHS experiences have made me cynical to the core. So I won’t try to explain why I’m so sceptical about these hospital questionnaires or why I feel so concerned that yours has more to do with money/ funding than it has to do with patient welfare. I sincerely hope your optimism is well placed and my pessimism -or cynicism - is misplaced 🤞🏻🤞🏻🤞🏻
Now I’ve just been called by GP to have yet another fasting glucose test after my rheumy bloods yesterday - which I can’t obtain in print copy form because the new practice policy is not to give them out to patients anymore. So I’m feeling jaded and miserable having lived off salads and low carb diet for months now. So no more from me for the time being - I’ve said enough. 😊
Lisa - there are many studies on the quality of life for lupus patients, and I recently read one specifically for UCTD. I think most doctors - yours included - are aware of the huge emotional and physical toll systemic autoimmune diseases have. I wonder if the questionnaire is looking for the best way to address the issue in their particular center. In the U.S. it is common to have social workers who work individually with patients as well as run disease-specific groups. How common is this in the UK? Just a thought that this may be one goal of the study. You could ask at your next appointment.
Firstly I'm sorry to hear that Jack won't stay in the box!! Hopefully now that you've changed your care it'll help u put a brick on the top or something!!
Our doctors see us for appts only..quick chat..quick examination..change of meds or not..etc..then off we hobble n they move on to the next patient!!
I went to see my dermy for an emergency appt in August 2018 when I was in full flare..I think he immediately understood the pain n discomfort I was in..that's when I started immunosuppressant therapy..up until that time he seemed to be a bit doubtful that I was actually ill (I generally put on the brave face)..he's attitude towards me since has been very different n we work together on making things as good as they can be!!
It's refreshing to think that at last the medical profession is treating holistically..mind body n spirit r intrinsically linked..no doctor ever sees us screaming into pillows or rocking backwards n forwards crying in pain..that's all done in our most private moments 😔
The questionnaire is not compulsory..it's up to the patient if they want to use the service..I believe that the doctor n nurses treating u r not out to label anyone..but a better understanding of how this 💩affects us emotionally can only be a good thing!!
I don't believe that this is some conspiracy to label patients..CBT is a recognised therapy n is very effective..mental health services r stretched to the limits (that branch of the NHS has always been the 'poor relation')
I have benefitted immensely from talking to Mind..I contacted them eventually when I was in the diagnostic wilderness..it helped me soooo much n that's how I actually got into getting diagnosed..she advised me of a good GP at my practise..I saw that GP..she referred me to dermy..the rest is history!! Both of these docs r ⭐ I understand I'm very lucky in that respect!!
I hope now you're at Kings n not having to wait so long between appts that u can get ahead n shove that Jack back in the box n sellotape the lid down (for a while at least)😹😹
I just love how you use my terminology and echo it back to me. It really makes me laugh.
I honestly can not accept that a rheumatology department would lead us into a trap. I actually feel in my heart that they are awakening and I honestly believe it’s due to the work pages like this does to get our symptoms recognised and address.
I love therapy because opening ourselves up to therapy shows that we are willing to help ourselves.
If we are not prepared to help ourselves, how can we expect others too.
I must step in here for a reply. CONGRATULATIONS Lisalou for the 245 days of not smoking!!! That is a mile stone, and needed to be applauded here. I, and I am sure some of us, you know who you are, have struggles with this idea for a long time. On again off again relationship with smoking. The endurance strength, mindfulness, and self being to accomplish, You should be proud!!! I sure am for you.Huge golf clapps to you dear one!!!! Lisalou, you have a strong being, and because you have done what many can only think of, that makes you able. Able, to take your abilities more efficiently to the next level..Expect yourself to bring the same resourcefulness and determination to the end... Ok, I am done, you are great... Blessings, and my peace to you Lisalou. thestormy sunshine
Yes, so true. And the more our doctors understand us, the better they can help us. We have to be heard in questionnaires and also get in the habit of expressing just how our illnesses are affecting us. Our doctors need to hear whether or not someone still has the energy to spend time with grandchildren, whether a young woman can go out with her boyfriend or whether a child can go with her friends for a swim. And how are we dealing with these changes emotionally? I think in pediatrics we may have been more progressive in terms of awareness of the psychological effects of medical illness.
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