Problems with hospital

[Marijo1951]

I had an annoying experience with my last hospital appointment, which was meant to be a telephone appointment with my rheumatologist or one of her colleagues, and was booked for 17th May. I received the usual letter and two text messages, but nobody rang. For the next month I repeatedly tried calling the rheumatology department, leaving several messages requesting a call. Nothing happened, so eventually on 13th June (a Sunday) I emailed the hospital PALS. At 9.30 the next morning I got an email response, and my consultant rang me just after lunchtime. She didn't apologise or explain what had gone wrong, but she dealt with me efficiently and politely.

I'm now in a kind of limbo as I haven't been sent a further appointment. They do send me a reminder every month to go for a blood test. I've got one booked for tomorrow, so I think I'll make my way to rheumatology afterwards and speak to the admin staff. It should be possible to do this now that the hospital is a bit less like a fortress, with nurses no longer lying in wait along every corridor to take your temperature and interrogate you.

I asked my GP last week if I could transfer my care from the hospital to him. However protocol dictates that the initiative to do so has to come from the hospital when they decide it's appropriate. It's occurred to me since that, as I have GCA as well as PMR, and also as I'm taking methotrexate, the hospital wouldn't consider handing me over. In that case, if they think I need them, they should be more diligent in offering me appointments and keeping them.

My hospital is the Royal Free in north London and, until May, I had nothing but praise for them.

[SheffieldJane]

Well done for taking the initiative. I hope you get joy from presenting yourself at the Rheumatology Admin. desk. It is quite scary to see the wonderful NHS so creaking at the joints. I don’t even get offered blood tests automatically. I am on Tocilizumab! We are having to be so much more proactive. I fear for the more helpless who are unable to negotiate the care they need.

[Viv54 in reply to SheffieldJane]

Well said , its all going so wrong to what was the best healthcare in the world ! Can not even bare to think long term !😪

[PMRpro Ambassador in reply to Viv54]

Sorry - it never was the best healthcare in the world - there are loads of others just as good and also free at point of care, and I'm not including the USA at any point there. It was good and when the proverbial hits your fan they will drag you out of the mire magnificently. But for ordinary everyday care it has been sliding for years.

[Viv54 in reply to PMRpro]

My opinion based on my husband being ill from the age of 45 with serious heart conditions, he's now 73 and would not still be with us today, if not for the excellence of the teams of Drs and heart nurses who have given him the most tremendous care. We were there on Monday, such caring people !Under such difficult circumstances, Long live the NHS 💕

[PMRpro Ambassador in reply to Viv54]

Oh definitely - but my entire family, including me, worked in the NHS and we all saw/see the other side of the blanket ...

[Viv54 in reply to PMRpro]

I can imagine!

[Francesbarbara in reply to PMRpro]

In total agreement. Three of our four children live abroad and I'm amazed at the efficiency of their health systems and NOT at great cost financially. It was quite a surprise to me.

[Marijo1951 in reply to SheffieldJane]

I had to fight to get the regular blood test reminder through the post. Previously I used to ring the hospital to remind them to 'put me on the system' every month, but that became impossible.

[123-go in reply to Marijo1951]

Things like this can be so wearying and stressful! In my case and most recently, my GP won't prescribe until she has heard from the consultant so I have to contact the hospital through the secretary's answering machine-huh!-to ask for a call back in order to speak to someone who will hopefully get back to me before meds run out. PALS have helped me out a couple of times.

[PMRpro Ambassador in reply to 123-go]

It isn't as if you are going to STOP the pred all of a sudden is it!!!

[123-go in reply to PMRpro]

Too little knowledge, it seems or lack of trust in the patient.

I had a surprise this afternoon. I'd reported that I was 7x1mg tablets short in my recent prescription ( on a 3 day cycle of 2mg 1mg 1mg) and would have none left for the last six days of this month. GP had based her decision to prescribe 1mg per day on the fact that she hadn't received instructions from the hospital ??? which is where trust in the patient comes in. My husband took my follow-up appointment letter over which confirmed the meds I'd requested and would be taking for the next six months. The prescriptions clerk rang later to say that the seven 1mg tablets shortfall could be collected from the pharmacy and that an extra FIFTY SIX 1mg tablets had been added incase I have problems in the future! They must be sick of me ringing 😂😂 because my prescriptions are often incorrect. Now, when they dig out my GP's own copy of the letter that she should have received when I got mine they'll have two. 😏

Excitement has made me gabble-apologies if you've even read this far or even understood!

[PMRpro Ambassador in reply to 123-go]

Of course I read to the end!!! It is their problem though, for a long term pred patient it really is a piece of nonsense to quibble about a few tablets isn't it? I know they are stricter about the repeat prescriptions because a lot of patients waste tablets but if we just stop we are potentially going to be in trouble.

[123-go in reply to PMRpro]

Very true. Before now I have always been prescribed exactly the amount of tabs I need for a month-never more. Feels like Christmas 🎁.

[PMRpro Ambassador in reply to 123-go]

Which costs the NHS more. The dispensing fee paid to the pharmacy is the same whether it is for 30 tablets of a given dose or 200 tablets. With a large number of tablets to keep you going for 3 months, the charge falls to a third compared with dishing them out 1 month at a time ...

[123-go in reply to PMRpro]

That's a revelation to me!

[Bcol in reply to 123-go]

Fortunately I don't have to worry about Rheumy or hospital, but I let my doc know what I'm likely to need for next three months and they just give me what I ask for.

[123-go in reply to Bcol]

An ideal setup, Bcol. Perhaps my GP thinks I'm dealing 🤔.

[MiloCollie in reply to 123-go]

That’s hilarious. Dealing?!?!😂 meet me behind Asda and I’ll buy some ones off you!

[123-go in reply to MiloCollie]

You'll easily recognise me- I'll be the one wearing a face mask.😷

[Bcol in reply to 123-go]

Luv it, don't think you'll get much for them though!!!!

[123-go in reply to Bcol]

Anything will help with the energy bill.

[Bcol in reply to 123-go]

I wonder what would get us the most, the Pred or some Co-Codamol's?!!!!

[123-go in reply to Bcol]

Hmm. I'll ask around 😂😂.

[PMRpro Ambassador in reply to 123-go]

Probably to most doctors too!!!!

[123mossie]

Very annoying, someone’s slipped up & missed you off the list. I had similar today, I had to wrangle with receptionist to get an overdue telephone review, and begrudgingly given an ‘urgent’ which came 3 hours late. Good idea to ask secretaries about your appointment, get yourself back on track.

[Sharitone]

I think you're fight, that they won't let go of you! But do you not have a Rheumatology Helpline, or similar? If not, they don't deserve your praise! What happens if you feel really bad? Do they expect you to go to A&E all the time? You have all my sympathy!

[Marijo1951 in reply to Sharitone]

There used to be a really good Rheumatology Dept 'gopher' called Keith and there was a nurses' line too which was run pretty efficiently. This all collapsed when staff were redeployed within the hospital because of covid.

[123-go in reply to Marijo1951]

We all need a Keith the gopher!

[123-go]

Delays, cancellations and lack of communication are signs of the times I'm afraid. I understand that hospital doctors' workloads have increased significantly due to the pandemic but I have felt the same frustration and truly sympathise. Fighting one's own corner has become the norm for many of us and well done for doing that.It helps enormously to know that we can express ourselves freely on this forum to let out our pent up frustration and concerns with people who understand.

[PMRpro Ambassador in reply to 123-go]

"Delays, cancellations and lack of communication are signs of the times I'm afraid"

Then you can't put it down to just Covid - it has been the case for the last 15 years. It was a part of the situation that drove my OH to early retirement - there was no enjoyment and patients didn't come first, it was paperwork, paperwork and box ticking exercises. And no money.

[Marijo1951 in reply to PMRpro]

I agree it's never been brilliant. I remember when I was training to work for London Underground in the 90s, two women who were on the same course had been receptionists/clerks in NHS hospitals. They both said they'd got out because they were fed up with having to lie to patients all the time to cover for inefficiencies in the system.

[PMRpro Ambassador in reply to Marijo1951]

It's the "best in the world" mantra that irritates me. I've been up close and personal with 3 different healthcare systems in Europe - all of them free at the point of care and, while different, just as good and in some cases better for some things.

[123-go in reply to PMRpro]

I have to say that pre-pandemic and pre-PMR I extremely rarely needed the NHS so I didn't have kind of experiences many people will have had; I suppose you could say I was sheltered in that respect. I'm sorry to hear about your husband and his forced retirement and I absolutely agree with your comments regarding starvation over the years of funding for the NHS (including children's services and much more) and the consequences of that for many. All this became glaringly evident to me over the past decade or so. Appeals for donations for individuals' treatments for all kinds of diseases are commonplace as are appeals for vital research. I don't want to get political 😏but it's all very well to hear speeches about 'doing this for the future' rammed down our throats when people are struggling in the present and are falling by the wayside. That's one of the reasons I bang on now about self-advocating because it can be productive.🤞🏼🙏

Oh, and the box-ticking and reams of paperwork were part of the reasons I retired early from teaching (voluntary not forced) when all that took time away from what should have been spent in the practicalities of catering for a wide range of educational needs. Grhhh!

[PMRpro Ambassador in reply to 123-go]

Wasn't really forced - just early as soon as he thought we wouldn't find things too tight financially and he found a paid hobby in a related field here. It meant we have had a good and enjoyable retirement for a lot more years than it he'd waited so good came out of it. He's been ill since what would have been a "normal" retirement age so it wouldn't have been much fun.

[123-go in reply to PMRpro]

That worked out well and the timing was good. How lovely to have a paid hobby! On the day I was leaving the school secretary asked me if she could put me on her list of supply teachers. I hadn't even considered it previously but said I'd give it a try. I knew the children as I'd taught all the year groups, no detailed records to keep apart from a note for the absent teacher, no staff meetings or parent consultations that went on till 10pm, marking I did straight after the school day ended or a bit during the lunch break so no piles of books to carry home. I did think it was money for jam actually but I pulled my weight although it was a whole different ball game. I'm so sorry for teachers who have to work until 65 because of financial issues. I would have been on my knees!

[PMRpro Ambassador in reply to 123-go]

We also got paid in kind to be the editors of a Congress proceedings in his field. Three of us got the travel and accommodation for the meeting and one did the language editing (lots of non-native English speakers writing science papers, nightmare), I sorted out the formatting and stuff and he did the bulk with collating papers, contacting authors to get science questions sorted out. It took over our life from August to xmas but what we did could all be done on the computer these days so we would take it with us in the camper van - just needed a site with wifi and sat outside with a view of various lakes and got on with it. Once we got the language lady into the 21st century and it was all done on the computer it was great. Got the occasional turkey - we live in Italy, a trip to Switzerland or Germany wasn't that exciting, but China, Korea, Chicago got us to Canada, and we tacked on a holiday usually starting/finishing at the meeting venue. Had also been to Japan, Oz, other US destinations - his travel was always paid. But totally retired now - just happened to coincide with Covid which has sent it online so no nice reward. I assume it has reverted to the President finding a team to do the necessary - and having to learn it from scratch every year.

[Carriemetz in reply to PMRpro]

“Paper work, paperwork and box-ticking exercise - and no money” - so true - u cd absolutely be talking about teaching also. What a pass to come to in, I believe, the 6th richest country in the world.

[MiloCollie in reply to PMRpro]

Fully agree. Also just taken early retirement after bullied out of NHS four yrs ago. Piss poor management and organisation. Poor patient service is the norm now.

[Nextoneplease]

My life has literally been saved on four separate occasions by the NHS, for which I will always be grateful 🙏 And yet, it was not so much the organisation that helped me, but rather the skilled doctors, nurses and others working within it. Our medical staff need to be enabled to do their jobs, and not be constantly frustrated by chaotic admin, crazy communication pathways and constant reorganisation (often dictated by political rather than medical need).

[PMRpro Ambassador in reply to Nextoneplease]

Quite ...

[123-go in reply to Nextoneplease]

Nail on the head!