Patient Initiated Returns List

[MrsMouseSJ]

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 Antiphospholipid Syndrome, Lupus, 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, and having to rely more on my GP to manage my APS in particular - a condition about which they have little knowledge, certainly not beyond the major risks.

My gut feeling is that I must request an appointment 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 there will be many other patients in a similar position to me, not just under the care of rheumatology but across NHS disciplines. It would be good to hear from others here. And is this a way to manage growing demand and declining medic numbers? It certainly has me rather worried

[Star13]

Yes unfortunately this does seem to be the way things are going. Schemes not unsimilar to yours are ongoing. I wasn't put on any list just told I was discharged! As my GP (like yours and many others) had no knowledge about how to treat me, I was quickly referred to another Hospital who quickly with the help of my Heamatologist accepted me. I have to say that the care Im now receiving is much better so no regrets.

You must make your appointment, find out what is planned and make sure you make yourself very clear when you tell them that they must keep you on due to the fact that you have no alternatives.

[lupus-support1 Administrator]

IMHO, you should ask for an appointment without further delay. Ideally, all patients should be seen every 4 months routinely. As this is impossible, you need to be seen regularly whenever! Often patients are unaware of signs until it’s urgent so please, look after yourself and see a specialist in SLE & APS. Not all rheumatologists are experts.

With good wishes,

Ros

[MrsMouseSJ in reply to lupus-support1]

Thank you, Ros. I am very worried about this. It makes me feel as though I will be living on the edge of an unstable cliff. But I don't know if my feelings and thoughts on this matter will hold any weight. My rheumatologist is, in my view, a superb doctor but, as I found out once before, he doesn't take at all kindly to being told what to do, or perceiving that this is what is occurring. On that occasion I had asked a rookie and entirely innocent question about testing for something else which he took to mean I was telling him what to do. I was really taken aback by his vehement response, although it did not in any way stop him offering me tremendous, ongoing support. But I feel like I could blow my chances here if I say the wrong thing about my worries. I have mild lupus but my life is blighted by long standing and constant severe fatigue, frequent pain, cognitive issues and other symptoms. My rheumatologist has been the only person I can really speak to about this, although he doesn't feel there is anything more in his drug arsenal he can offer me. But he has ensured that my inr (I am on warfarin) has been maintained at a high enough level, for example, something the GP would not have agreed to without his insistence. And which helps manage my symptoms to some extent.

My gps don't really believe in severe fatigue! The thought of being out there again, on my own fighting for basic assistance, is really depressing.

[lupus-support1 Administrator in reply to MrsMouseSJ]

No one should be made to feel as you do by doctors! Some are arrogant narcissists who fail to see “you” but see an object called the “patient”! I have had my fair share but it seems you have a GP & consult who are the omnipotent doctors.

I don’t know what to advise but perhaps a letter to your doctor asking for help? It might appeal to his ego as the expert/rescuer! It shouldn’t be like this but . . . It can’t do any harm!

Please let me know how you get on!

[Patientlyoptimistic in reply to lupus-support1]

Hi, I am relatively newly diagnosed with APS following a young stroke. Nobody seems to want to keep me on as they’re not doing anything for me. I was discharged by rheumatology and haematology wouldn’t even take the referral. I have since seen another rheumatologist after a bit of a battle who has said he will review me in a year, he also told me the the haematologists at the hospital are not interested in APS! Im really interested to know why a four month review is needed, if you wouldn’t mind please?

[lupus-support1 Administrator in reply to Patientlyoptimistic]

Every patient with autoimmune conditions should be seen regularly simply to see how you are doing. My GP had to send me a letter to see her as I don’t like bothering doctors and just get on with it! So, we had a chat and she asked how I was & I replied OK.

At the end, she asked if there was anything, so I happened to mention that for the last 6+ weeks, I had a coughing fit when I laid down. She examined me and said that’s because you have pleurisy and an x-ray also confirmed pericarditis!

You see my point!

You are entitled to be seen regularly by your rheumatologist who should care about you as a human being, not just a problem with a bit of you.

You deserve to be looked after and have the medical care you deserve without feeling you are a burden.

With good wishes,

Ros

[GinaD]

Neither the US nor the UK spend wisely when it comes to health care! I would like to require each and every legislator to read, and pass a test on understanding Adam Smith's" Wealth of Nations!" A nation's wealth requires investment in infrastructure -- education, health care, justice. This kind of PRIL regulation may seem reasonable when viewed from a top down economic approach, but it is: A immoral, B self defeating as consequence of poor sustaining care is more expensive emergency care and C a decline in the real and economic health of that nation! I am so sorry to read that you are in this position! Here in the US where most standard health care is only privately funded, many who can not afford health insurance must go to the ER for simple diagnoses and treatments. Therefore, ERs are jam packed with non emergency patients who have no alternative to diagnose and treat their illness. I know someone who had been seeing his regular doctor for treatments of a serious but chronic disease when his symptoms required emergency treatment, He went to the ER, was hours later triaged and only then given a gurney to lay on! No treatment, just a gurney! He stayed in the ER for 18 hours! Now when my docs tell me that if I have this or that symptom I should immediately report to the ER -- my reaction is to laugh and say.,, "Really ? Really?"

[MrsMouseSJ in reply to GinaD]

Thank you, you make many good points. And, having spent a year in the States, I was struck by the role ER played in some people's lives...

[MaryF Administrator]

I would certainly be requesting an appointment, I hope they can sort this worry out for you. MaryF

[Yodel]

I am having the same experience MrsMouseSJ! Not received my 12mth review appointment and am told to expect a long wait. Ditto with waiting for rheumatology referred therapy appointments. Has APS gone off the radar?

[MrsMouseSJ]

Frankly, post Covid, I think much chronic illness has gone off the NHS radar. I recently had to go for an annual examination conducted by a physiologist. I asked how things were, in terms of the health service coping with the backlog caused by Covid, and she said, 'It's disastrous. Absolutely disastrous.' Then she went on to say that at least we are not in the south east of England/London, where things are even worse. Says it all, really...

[GillyA]

Just picked up this post by chance. After being diagnosed in 2020, I had been what I thought was a pretty boring patient. No problems with warfarin, largely stable INR, no further signs of clotting, I was half expecting to be discharged. Then after a bad fall in December with lingering after effects, a mad session with INR (7.9) and two limited internal bleeds, I think I’ve had 7-8 heme appointments, who have worked with plastics, rheumatology and orthopaedics to hopefully resolve and restabilise.

At my appointment a couple of weeks ago the haematologist said they never discharge APS patients from their clinic. They can and do reduce to one phone call a year for patients who are fully stable, but they find illness or trauma can result in crisis as I’ve had and it then needs the specialist intervention they provide to work with other disciplines. I know I’m incredibly fortunate to have had this level of support when I read other messages here.