Whats your area like for non clinical advice? - LUPUS UK


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Whats your area like for non clinical advice?


Apart from 30 years in nursing care, I now have experience on the other side of the bench. This has included my own condition Lupus and other autoimmune conditions but also now my son with Graves and APS. I sit regularly in waiting rooms listening to other patients, they are mainly happy with the clinical care they receive but the support and advice about daily living remains lacking.

In my area there seems to be no nurse specialist for autoimmune conditions or suggestions for daily living and young doctors never seem trained in asking about lifestyle choices or how to do a physical examination. Neither myself or my son have been examined in 18 months.

An example of this is my sons care. He is 29. in May diagnosed with Graves, then got a DVT. Then diagnosed with APS. Since then he has had no further advice just medication. He is constantly asking how to cope with the fatigue, nausea, migraines, hunger, joint pains and which conditions these relate too, but these are not answered. Last week he was admitted to Glasgow general follow severe migraine pins and needles and slurred speech. Due to APS they did a CAT scan. Luckily clear. Even with this knowledge today they would not refer him back into neurology.

We have looked most things up ourselves and used common sense. he has followed my experiences, but surely the expenditure the hospital would pay for a nurse specialist or occupational therapist would be worthwhile you all of those patients.

I would be pleased to hear others thought about your areas.

9 Replies

I very much agree with you. I always say to my family, don’t rely on doctors. They do a fantastic job with what they have learned but as a patient you need to be proactive.

I too have a myriad of issues, one being admitted with a double PE. I was put on Rivaroxaban but no explanations as to what to expect from there on.

For myself i just use common sense and knowledge i acquire from sites such as these here.

I do ask a lot of questions and unless i can understand the answer given and it seems feasible, i will read up on the subject before I believe anything!

I must be a drs nightmare patient

I wish you and your son only the best


johare in reply to ursi

I think its such a waste of resources and potentially a waste of NHS money, despite dangerous for the patient. I totally understand that the time slots for doctors are limited, however, for us they are our moment in six months a year to ask all our worries. The cost of a well trained nurse to run clinics, would surely be a time and money saver.

As a school nurse once a week I would have a drop in for parents/teachers. It was well attended or they could phone. It saved my time as well. It is both proactive and stops people worries and using a doctors appointment for a small query.

It worries me that people turn to the internet for answers. We support each other, many people have no one.

Thankyou for your reply.

Hi Johare. There is a nurse at our hospital for rheumatoid arthritis patients. When I was diagnosed with SLE, I had to find out about it myself and have continued to do so for the 11 years since diagnosis. I have been given meds by the bagful, but no other support at all even when lupus forced retirement from work at 52. I can only wish you and your son all the best x

I don't think there is a rheumy nurse either at mine. I don't think that the medical profession sometimes understands that its not always the condition that needs fighting but the change in lifestyle. There seems to be little assistance for that.

Prior to being diagnosed with Lupus I was diagnosed with CFS. I was then seen by an occupational health nurse who was amazing. She taught me how to pace, how to look at life differently. Shortly after funding was cut and she lost her job. Without Sheila I think I would have retired two years earlier.

It is the same here in Surrey - I was discharged back to my surgery by 3 Consultants within a month of diagnosis. My Dr was pregnant and left so I had no follow up or after care just a “bag of meds” as someone else said. I am 70 and a sole carer for my very poorly husband. I felt dumped because of my age. I joined this forum and the Sjogrens one and it helped greatly. I run a meeting group and I would say our first three meetings were spent discussing the lack of autoimmune knowledge or specialist nurses or clinics.

Luckily a young person I met who worked for the NHS told me of her improvement since she went to a registered Medicinal Herbalist. I went and have improved no end - a lot of that is because he sees me monthly, monitors how I am doing and advises me.

johare in reply to Cas70

I think support is the key, Whatever form it takes. I am so glad you have found a way through. Believe me when I say I am a true believer in our NHS system, I jus feel money could be spent more wisely at times.

Cas70 in reply to johare

It is very sad, I just wish there were a solution for the NHS -


Good post.

I touched upon this on my post yesterday about getting a second opinion for my sister.

And I’m sorry to hear about your frustrating situation with your son.

I have started a support group in my area and am frustrated by the tales I hear.

None of us are satisfied that our care is what it should be. In fact it falls very short. It seems that our Rheumy department has not adopted the BRS Guidelines for the treatment of adults with SLE. They chose who it should apply to and who it should not.

Bit of a gamble when Lupus can be doing things inside without any visible sign.

Most are not getting 12 monthly checks or even being told that they might be discharged back to GP despite having lupus / anaphylaxis/heart conditions/ being methotrexate etc etc.

I think mostly they do not know what to do with us next.

Plus because we are in Wales there is a block on referrals outside of Wales - cost implications rather then what is best for the lupus patients - so none of us can get a referral to a lupus specialist or lupus centre of excellence, on the NHS.

No one seems to have a back up plan for flares etc.

A lot of my members have paid privately for extra help.

On top of that, we continuously hear that one of our reluctant Rheumies runs the RA support group, along with the Rheumy Nurse. They have quick and easy access to Physiotherapy, hydrotherapy and even acupuncture on the NHS.

A lot of my members suffer from migraine and would hugely benefit from acupuncture but no, we are not offered this.

I was referred to the Rheumy Nurse for an appointment three years after my initial diagnosis. I asked her why I hadn’t been referred before. She seems to provide help with life style management, emotional support etc. She said she didn’t know why. RA patients get referred automatically but lupus patients don’t. But historically she said RA is where our patient base lies. I haven’t seen her since.

A lot of my members had no idea she existed and had never been referred to her.

But if she could just hear herself, is that fair?

To be honest though, people that have contacted her for help have been disappointed. As the Rheumy Nurse she does the 24 hour hour help line. Some report her taking 48 hours to get back to them and others never getting a reply. But her advice lacks lupus knowledge. Often people being told the wrong thing or left to get on with it, ignored.

Lupus is just as life changing as RA. That diagnosis puts you on a rollercoaster ride of emotions. It feels like you grieve for the person you used to be, the life you used to have, a realisation that life will never be the same again.

Why is this illness treated so differently to RA?

I am finding the injustice of this all very difficult to deal with.

So it seems we are not the only ones who feel this way. But how can we change it? Finances are a major factor here, delaying change for us.

Wendy x

johare in reply to Wendy39

I have started some coffee get togethers in my area. Nothing formal, as the nearest formal meetings were over ten miles away and many people cannot drive. They have been a good form of support for the ladies that have so far joined us.

My hospital five miles away has a Lupus nurse, my actual hospital doesn't.

Like the many you have mentioned I went to private care to get myself sorted, but only because my husband was covered by work that he pays into. They will no longer cover my care. In my half hour visit apart from baseline obs and urine , I would have joints and skin checked, a quick verbal questionnaire of systems and so could raise concerns in an order. In the 18 months I have returned to the NHS no one has checked me physically, other than BP and urine. Most of these checks a nurse could do pre doctor.

For example my peripheral circulation is now very poor, how do they know if they do not look or if I do not have the presence of mind to link it?

My son also, since his two diagnosis, has not been physically checked by either consultant or GP.

Surely this realises so heavily upon good history taking and people offering information that they consider important.

As a young nurse the importance of these skills were drummed into me. Has this art gone?

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