A research team at Manchester University is conducting a survey to find out what people think about the letters doctors write after appointments (called “clinic letters”). They want to use the findings to create resources to encourage and support rheumatology healthcare professionals to write directly to patients.
You can participate if you:
- Are currently a patient of an NHS / HSC rheumatology outpatient department in the UK
- Are aged 18+, and
- Have attended two or more NHS / HSC rheumatology outpatient clinic appointments in the UK
It is great that this research is being done. Unfortunately, I can't take part as I'm not an NHS/HSC Rheumatology patient.
It is a shame that people who get discharged by the NHS, rather than diagnosed, can't be included too. Also, patients who have been discharged at a later stage are excluded from the study.
These are limitations as the researchers are not looking at instances around diagnostic decisions that prevent patients having the benefits of treatment, reviews, rheumatology nurses to help etc etc and where patients, and their GPs have to work out another course of action.
I had two NHS CTD appointments, so got two letters.
One stated that symptoms were due to anxiety. There was mention that 'UCTD was too difficult to diagnose.' Letters focused only on blood results and exam findings. No mention of reported symptoms and said photos could not be used for diagnostic purposes.
I used 'Family and Friends' to provide feedback but it would have been good to have had someone in the department to talk to about the letter.
My GP then, knowing I was ill, said he would refer me anywhere in the UK to ensure I was treated. I did not want my apauling experience to be replicated, so without medical insurance for the first time in my life, I went private. Many are not so fortunate to get the help they need.
The letters I now get from private rheumatologist, I think, exemplify best practice.
Addressed to my own GP, (not the wrong one as happening with some NHS letters defaulting to one doctor at the surgery).
1. Headings for 'Diagnoses', 'Medication' - all information given is well worded, relevant and correct.
2. Outline of conversation, exam results, what has been happening, symptoms since last visit. (I am believed) The extent to which medication is helping.
3. Action points - Any medication changes. Dose to take how long etc. What to do if I flare, if need help. What can do later if symptoms worsened, changing medication, dose etc.
Never find anything wrong with these letters. Every sentence says lots. All very concise too.
I hope this information can be shared with those conducting the research, and that others discharged (some of whom may get the worst letters), can contribute at some stage.
exact for me, only my gp resorted to ,I dont think you will ever get an answer. I was told they didnt know enough to diagnose myasthenia but all of my problems except for bloods have evidenced lupus and aps as written in reply from complaint 'rheumatologist wrote signs of possibly lupus aps or vasculitis'. this is before the onslaught of two years of horrendous symptoms where ive been unseen other than the call to take the steroids .yes letters only on blood results and dermy said I had shown high ck in bloods a couple of times ,yet in report no mention of this.(yet referred to neurology). raynauds uticaria and erythema diagnosed and now saying possibly in complaint. letters have been contradictory, and false and neglect self reporting to huge extent.
I told the neurologist embarrassingly so of constipation and bowel leakage and urinary incontinence and he wrote urine frequency and urgency and constipated.he also wrote no atrophy on limbs and I have clear shrinkage of right wrist even pointed out by people to me so how a trained specialist denies is beyond me.i could go on but .
I feel anxiety is being used yet anxiety is from the way ive been neglected only.
I am one of those not fortunate to get the help I need.
most worrisome is the pattern in family with being told ok and problems unearthed, most recently daughter told nothing wrong and yet now there is. I worry too that although we both had minor problems in beginning they have worsened for both of us with being told bloods ok. I also have concern as to covid immunisations and our developments of problems 🤷♀️
for research to hold significance people discharged yet with progressive symptoms need to be included but you are much better at wording than I, and I blame the neglect for my cognitive problems unaddressed.
The thing that really, really annoys me is there are better tests - this Dr Donald Thomas video is worth all involved (or having an interest in lupus), watching from start to finish:
Also, now being in my 60s, I am probably not so suitable as a patient. Especially in the area of research, which now through the inappropriate use of the 2029 SLE ACR / EULAR criteria in many NHS hospitals, seems to be determining who is seen. Where is there any patient centred accountability - it is.lost to profits and professional advancement with often only more senior doctors having the guts to question things
Far more research needs to be done on who is being missed and address the totally ludicrous reasons they give for not seeing patients. Hence the advantage of extending the clinic letter research to all who have been seen by NHS Rheumatology. It could go further than being interested only in the patients they are currently seeing.
I wonder when Dr. Thomas made that video. It seems a number of insurance companies, including Medicare and Medicaid, cover the avise test. Maybe it is used in the UK only in unclear cases of suspected lupus. But it could become standard in both countries.
A lot has to do with test definition in 2019 SLE ARC / EULAR Research Criteria.
Avise needs to be included here..then things would change 🙂
And back to this post;
Another area of research could be the dynamic around the interest in profit-making activities, like research, and how they impact on day to day patient care - particularly of patients with conditions not currently covered by any lucrative or shiny in vogue research.
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Cambridge University survey......James Brimicombe 
