I last saw my rheumatologist nearly 18 months ago and it was only after I had my appointment that I realised I hadn't been given a date for my next appointment, as was usually the case. I assumed that this was due to the backlog caused by Covid and thought nothing more about it until last autumn. But then my husband was very unwell and I didn't get round to doing anything until recently.
I have now been told by the rheumatology secretary that I have been put onto something called the Patient Initiated Returns List by my rheumatologist. This apparently runs for 2 years at a time and, as the name suggests, enables the patient to make an appointment if they deem one necessary. At the 2 year point the rheumatologist then decides whether the patient should stay on the list, go onto a higher priority list, or be discharged (apparently the patient isn't told if the latter! Presumably they find out via their GP??).
My rheumy should have told me this, but didn't - presumably this was overlooked in the chaos of Covid and its effects across the health service. Anyhow, I am wondering how being on the PIRL will affect me and would welcome experiences from others in a similar position. I am in Scotland (I don't know if such lists operate elsewhere in the UK), have Lupus, Antiphospholipid Syndrome, and a host of other conditions, and am on ESA. I am particularly concerned that being on the PIRL or even not being under a consultant (were I to be discharged - the rheumy has been a key player in so many aspects of my care up to now) would make my re-assessments for ESA so much harder. I am also concerned about having to make judgements myself as to whether to request an appointment. My gut feeling is that I must request one before the current 2 years period under which I am on the PIRL ends, even if I feel all is ticking along okay - simply to get to speak to the rheumy about this and how my future care will pan out.
I can only assume that they will be many other patients in a similar position to me, not just under the care of rheumatology but across NHS disciplines. Is this a way to manage growing demand and declining medic numbers? It certainly has me rather worried.
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MrsMouseSJ
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Thank you Mrs MouseSJ for bringing this to the attention of the forum. In England we have a Patient Iniatiated Follow up Appointment (PIFU) whereby we can make an appt when we need to see them rather than they telling us when it should be. Your scheme in Scotland sounds much harsher!!. Not all specialism's at our hospital are doing it but they will I'm sure as a tool to bring the waiting list's down. It must have been a shock when you learn't about it MrsMouse!!.
My advice is to make an appt within the 2 years so that your on their books regardless of whether you need it or not. This way You prove that you still need their care and by the sounds of your history, you certainly do. We have to be smart these days to get the best care possible in these tough times. Hope I've helped. Xx
Thank you misty. Yes, I think this must be a way of trying to deal with patient numbers and lack of staff. If one is relatively 'with it' it's okay, but I do wonder what happens to very elderly, and other vulnerable groups, who may not notice the passage of time/forget to contact, etc.
I agree MrsMouseSj. One has to hope those vulnerable groups have someone like a family member or support worker who can advocate on their behalf!. Its tough when there will always be someone who misses out. This is why its so important to bring these things to the attention of a forum like ours so thank you again for doing so. Keep as well as you can. Xx
A similar thing has happened to me in CAMHS, (Community Adult Mental Health Services). Rheumatology appointments are still happening as usual (at the moment!) for both myself with Lupus (SLE) & husband with RA.
I have PTSD (retired Paramedic), mixed anxiety & depression plus I have been an inpatient following nervous breakdowns & ‘unwell’ episodes. I have had regular appointments with Psychiatrist plus the option to see Duty Professional in between.
However, at my last consultation in September 2022 I saw a new fangled advanced nurse practitioner rather than a Dr. I am not quick to judge having worked as a medical professional myself, but she wasn’t very good at all, (incompetent in fact), made lots of admin & medication errors, was totally unprofessional and actually made herself look quite silly.
Following this I received a letter saying that I was now to be on , ‘Shared Care’ with them & my GP - I was somewhat dumbfounded especially as my medications are Secondary Care ones & GP won’t prescribe them without say so from Consultant Psychiatrist. It concerned me greatly as I felt I was now in no-man’s land & had been completely abandoned without support.
I had a major relapse Nov 2023, contacted GP who immediately contented Mental Health Hospital, for me to be seen urgently. Last week I still hadn’t heard anything so as my GP’s now has an on-line system where my health records/test/results/appointments etc can now be seen, I discovered a letter sent to them from CAMHS….unbelievably it stated to tell me to contact a Pharmacist should I require advice/information about medication! …. More unbelievably, the Mental Health Hospital had not sent me a copy of the letter. …..I was just patiently waiting for an appointment, sigh.
I’m still trying to get my head round it all so hearing your story tells me that it seems there are changes happening which are invariably going to cause suffering to the patient.
I completely understand your fears but I’ve come to the conclusion, despite any changes in process & policy, our bodies, illnesses & ailments probably aren’t going to change in that they totally disappear or miraculously get better, therefore we will still require appropriate medical help, support & intervention.
It’s distressing & worrying that we we may have to beg & plead for it particularly as we’re accustomed to the familiarity of the tried & tested ‘old’ systems. We will just have to cross the bridges as we get to them x
Hi Mrs mouseSJ, as far as I’m aware this does happen in the nhs, it comes from a conversation I had with my rheumatologist a few years ago. I’m also under the Gastrology team who I don’t have much faith in and would quite happy not see them anymore, but rheumy consultant said if I didn’t speak to them within 2 years I would automatically be discharged and would need to be referred, which would not be great if my condition suddenly deteriorated.
Since then I’ve always made a note of appointments in my diary and a reminder for the following year to phone if I’ve not heard ( or whenever the consultant says) I find since covid I’m having to now do this with rheumatology and optometry. Funnily enough gastro always ring yearly to check on me 😂
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