Might be worth doing as individuals (England people! ), at change.nhs.uk/en-GB/ .. big consultation meant to help new government plan. Will the charity be involved?
NHS survey: Might be worth doing as individuals... - PMRGCAuk
NHS survey
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Excelsior80
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DorsetLadyPMRGCAuk volunteer
Link from above doesn’t work, although that in email notification does -
In reply to your question on charity’s involvement have tagged both Fran_Benson and SophieMB - but they may already be aware.
Have completed.
thank you, sorry, edited
No problem…but you can always see if it’s working when you actually post - the writing turns blue. Unfortunately you don’t know whilst you are drafting it, it only does that when post appears on forum. 😊
Just getting one decent modern computer system would help. I am not sure just talking about the problems with the NHS will help that much. People have been doing that for quite a long time already.
I saw an example again on Bad Skin last night. Years of eczema, all her life, hardly any improvement but they kept on giving the same creams and stuff. Dr Emma changed the prescription and in 4 months the girl's skin was like a baby's! But the NHS was pouring money down the drain and achieving nothing. The medications may have been pricier but worked so weren't being wasted.
I am very fond of Dr Emma. It is amazing the number of people who have been having problems for years with the poor patients being given products that do not work and also diagnoses that are wrong a lot of the time. We waste so much time and money on the NHS, with cash just going down the drain. I have noticed the BMJ is one big whine by doctors nowadays saying how awful life is and how underpaid they are, while in the good old days they actually talked about medical problems and even patients.
Me too. Maybe it is for the cameras but I was thinking last night - her technique with patients should be part of teaching in med schools. She understands their pain and says so,
Skin A&E is often more fun with the option for "popping" things, But both actually deal with things that are ruining people's lives with embarrassment. With the run on mental health services you would think the rather silly refusal to do "cosmetic" procedures that take 15 mins would be reversed. Severe psoriasis that is not dealt with using MTX but gallons of useless creams and hours of patient time. And on and on ...
I have nothing against copays of the sort we have here if it means I can have better care. Now I'm poor enough to get everything free except the 1 euro prescription charge. But for that I get Actemra as a means of not needing the best part of 20mg pred to function.
Haven't read a BMJ for years.
She is sooo enthusiastic though and really seems to enjoy what she is doing. As you say it could be the cameras.
It is not just “cosmetic” procedures” being stopped. I am not sure what the NHS does now. The whole thing is in a mess. It is sooo inefficient. I have got a lot of time for the new Health Minister, Wes Streeting, he seems the best in the Cabinet. I wonder if having had cancer has given him a different outlook? The trouble is he has got the militant BMA to deal with as well as a shambolic administration to sort out.
I agree we should change our system in UK. I would not like to try and sort it out though!!
Sorry to ask but who is Dr Emma?
There are two dermatologists called Dr Emma, the one we are talking about is Emma Craythorne, a consultant dermatologist in London with a private practice who does a TV docusoap called Bad Skin.
Dr Emma Craythorne, Consultant Dermatologist who works at the St John's Institute, Guys & St. Thomas' but the programme is at her private clinic in Harley St.
Is there any chance you know what series and episode this was? My daughter’s body is covered in eczema and after 18 months of seeing her GP she is getting nowhere. She can’t see a NHS dermatologist for 12 months, they won’t refer her for an allergy test so we went private but it’s still no better.
I would be very interested to watch the programme you referred to but I can’t find the episode. Is it called The Bad Skin Clinic on Discovery +?
Thank you
The series is called The Bad Skin Clinic, yes. It was the episode I watched last week - I watch it on a platform called FilmOn as I don't live in the UK. It was on Really TV on Tuesday, must have been Series 7, Ep 3 I think as far as I can tell - not easy to look up, I just get the current week and can't look back.
Over the time I've been watching the series I have been taken aback at just how pathetic dermatology is in the UK! It's the same with all GOS, "here's a cream", no instructions. get on with it. I only experienced a dermy once with the NHS - there was a question as to whether my skin problem was dermatitis herpetiformis, a form of coeliac disease, and she was absolutely foul since I had discovered it went away if I ate gluten-free so hadn't been eating any gluten at all and she said she wouldn't do a biopsy - I'd not been told anything but as far as she was concerned it was my fault. The nurse asked should she make another appointment in a few weeks when I'd come back having eating wheat and she was dismissed out of hand and very nastily "it isn't cancer". That is all that interests them. In the end it turned out that it was a wheat starch allergy - the starch in highly commercialised wheat. I'm fine with spelt, kamut, rye, barley, so it isn't gluten. I can keep it at bay with diet and it is easy here.
However - my granddaughter had a dairy allergy as a baby which manifested as eczema, but it seemed to fade as it often does, only to return as brittle asthma when she was about 7 or 8. Her teenage years were spent in and out of the ED, it was touch and go a few times and the doctors hadn't a clue what to offer. Then she went vegan - she still has asthma but "normal" and it hardly bothers her, she even is able to work now. And her mother's skin problems also disappear on a vegan diet. As soon as there is even the slightest amount of dairy in a meal - within 24 hours she breaks out. It really is worth trying.
wow i will tell friend who used to have asthma now eczema to try vegan....another friend had bad acid reflux for ages, put on omeprazole, sort of worked but not well, then stayed in the far east and ate completely different diet for a while and the reflux vanished completely, returning when home. Diet often seems important. My impression is doctors wont suggest anything unproven and setting up big trials of diets would be hard and expensive and not end up making money for anyone. So you just have to try changes and see.
It really is quite easy these days - if you are a bacon fan its hard!!! And if it works for something like that, it is a lot easier to stick to!
To confuse things - I was able to eat bagettes and pain aux raisins in France - the flour they use is different and I wasn't allergic to it.
Thank you, I will take a look at that episode and pass on your advice re a vegan diet.
I know, Im a bit sceptical too but I do think they want to get a grip on things ... Theres a lot of gradual decline to reverse and it does become a political football but unnecessary complication and waste could be addressed i think and yes on computer systems ... so much old stuff not working well and eg danger of cyberattack more with old kit . Staff and patient knowledge is important
I think Wes Streeting is probably the best person to sort it out as he does seem to talk sense. The whole administration is in shambles in my opinion.
“…..the best person to sort it out.” 🤞🤞🤞
Interesting to see who funds Wes Streeting. goodlawproject.org/how-priv...
I hope you don’t believe everything Jolyon Maugham, founder of the Good Law Project, says. He is a very contentious lawyer, whom I find I either agree with one hundred per cent or disagree with one hundred per cent. Normally the latter. This is quite an amusing article by Guido Fawkes, who I do like, about the Good Law Project”. As the article says “Guido has long documented the travails of notorious legal loser Maugham.”
order-order.com/2024/09/06/...
Ahh, I see. I'd like to see the NHS completely in public ownership and publicly accountable, so I'm concerned by the number of MPs accepting money from private healthcare companies, all listed on the parliamentary register of members' interests. But we'll have to wait and see.
I don’t care who pays for the NHS provided we actually get a good service. Let’s face it the GP system is not even part of the NHS. They are their own little fiefdoms, although, I do think it would be a good idea if they were part of the NHS. It all goes back to 1948 when Aneurin Bevan was forced to ‘stuff their mouths with gold’!
Not necessarily at all - there is a role for private provision as long as it is regulated properly. Germany uses a mix and there is some private outsourcing here to take up unused capacity. The state system can piggy-back on private capital provision and the state patient benefits. You get a basic level of free at point of delivery provision by law and can get top-up insurance for frills if you want and can afford it. The downhill slide in the NHS coincided with the removal of pay-beds. In Germany I had baby No 2 on the basic provision level but got scans with the fancy devices that were used for private patients 8-5, and for us in the evenings. If the private set-up hadn't funded them, those scans wouldn't have been available at all. It needn't be a bad thing. And private beds in a proper hospital means access to ICU - better for the patient since if things go wrong in a private hospital in the UK in many cases it is a 999 call and transfer to the NHS anyway but the NHS doesn't get reimbursed for their part. The money needs to follow the patient and it doesn't - that's why the so-called half-arsed market in health care is to the detriment of the NHS.
My usual reminder that despite them using the suffix .uk it’s actually just for people living in England, not the UK as a whole.
so i am sorry again and editing again .. 🫢 i think Scotland doing better than England healthwise (no experience of Wales)
I wasn't blaming you! It was just so those of us outside England don't waste time looking at it. It keeps arising with information about e.g. vaccinations and it's often different outside England. Not sure why NHS England can't use something other than .uk when they actually mean England... 🤷♀️
Why? Some of NHS Scotland sites still have - UK in their address - this for example -
The domain for England is ‘.uk’- there isn’t a “.eng” whereas there is a “.scot” see this for example -
Maybe there should be a .eng then too! 😉
Above my paygrade - unless you want ‘.vik’ of course…😳 might be able to swing that…
‘Vik’……I’d vote for that 😃.
But they have .scot first which makes it clear it's for Scotland only? If NHS England could put e.g. .eng first that would be helpful surely? I see that on the full address in your message it says nhs.uk/en-GB which I presume means England but the addition of GB might be confusing too - it might be better if the countries could all coordinate their naming protocols so it's clearer for users!!
Anyway I was just wanting to save people wasting their time if they didn't live in England.
Was discussed some time ago apparently- in 2014 -
"clearer for users" - since when did that concern Gov.uk or branches thereof? This in the wake of not finding any indication on the HMRC website to actually request a CTG account number. Not part of your online tax stuff - it is separate but nothing tells you that. Not even the person you speak to if you phone HMRC.
We can but hope...
All done, fingers crossed and we can but hope. Won't be quick though.
i found some questions hard! For myself, NHS been very good so far. Relation with complicated pregnancy, really good too ....but felt precarious ... stressed people, understaffed clinics, poor buildings (sewage coming up drains type poor) .... everyone competent and doing their best but you felt something might slip in the situation.... my mother with alzheimers and other issues real mixture of great care and not acceptable at all, especially communication between systems .... friends some horror stories .... especially waiting for operations and mental health .. how do you summarise massive ups and downs as satisfied or not with the way its run? I guess not, the bad stuff shouldn't happen ... but theyve been great in my case 🤔
In real terms, I've had no problems with the NHS either, yes I'm still waiting for my CTS surgery but other than that it's provided everything I've needed promptly and efficiently. It is difficult to give a true reflection of what is good or not so good when you only have a choice of boxes to tick, rather than go into longer detail, but hopefully it will give them enough of a picture to work with.
Such a shame it's not UK wide. I consider myself lucky to be under a dedicated vasculitis team (albeit shared resource with other departments) here in Scotland, and to have regular appointments. But there are some fundamental things I think would make a massive difference. For the medical staff and patients. A single integrated medical notes system is crucial. Especially for time criticial instructions to GP. I had a follow up letter take 7 weeks to get to the GP (with new prescriptions) only for it to have already been overtaken/superseded by a follow up appointment. Too late, the GP had already dispensed. Don't get me started on the value of unopened drugs they can't reuse 😂And make medical notes accessible to patients. So we can see bloods etc without having to badger for them. I've friends in England can access theirs.
If you haven't accepted them from the pharmacy they used to be able to redispense them. Everything comes in original packages here and I watch the pharmacist counting the packs out so can say yes or no at the time.
I get a summary letter in my hand at a specialist appointment - typed and printed out in front of me so I can go straight to the GP and hand it over if necessary though the specialist will also give me prescriptions for anything I need at the time. My GP can access my hospital notes from the local hospitals, not the regional centre yet though, and the specialist can't access all the GP notes - for confidentiality would you believe. And ALWAYS a same-day f2f with the same GP if needed - turn up and wait at a single-handed practice, no 10 min limit for appointments, you get what you need and everyone knows that they will get the same.
Now you are making me jealous 😂. We work quite differently here. Being rural also adds to it as our GP dispenses. And going back to Covid times we don't even see a prescription, just the items when collected. I could ask for my prescriptions I guess and them tell them which to dispense. But I am also talking about dispensed drugs that never even got opened. Because the issue went away or the treatment changed.
I long for the day the hospital and GP (and patient) is on the same system 🥰
But all that said I never struggle for a F2F with my GP. And the vasculitis interval can be phone or in person, set at an interval that works fir both so I am very lucky - if I don't think about the 2 hour drive ti get there 🙄
What hospital is that?
Our surgery also has its own dispensary- and I order my meds via the IT System the surgery operates [systmonline in my case but others available ]. You can also order via the NHS App.
When you collect your meds, you should be offered the second page of the prescription which can either be completed manually by you or left at the surgery for them to use as a repeat. I always take mine, as I don’t need every med every month. It then gives you the option to request what you actually require. Suggest you discuss with surgery.
systmonline.tpp-uk.com/2/Lo...
I order mine online too. The issue for me was I was dispensed something new that was superseded. I do get a copy of the second page for repeats but we just do those online. It's not the repeats that are an issue, it's the new prescriptions as they act on thr instruction from the hospital same day. Then I get a call saying I have something to collect. Have already discussed and have tried to 'head them off'. It's a wee rural practice who work really hard to provide for an aging population, some who don't even drive. Mostly it works. I just feel a single integrated system would resolve some of the crossed wires 😂And as explained earlier, it was more the returning unopened drugs I find to be a waste.
Okay see what you mean… and totally agree about unopened drugs.
Can remember a few years ago [more than 11 years as my late hubby was still around] I supplied a lot of info because it was mooted that a single integrated system was in the offing. Unfortunately it was ditched, so I have to say I’m not holding my breath for anything spectacular in the near [or probably distant] future.
All that said, I was at rheumatology on Thursday and this time (new doctor again) just did an "email" note with new prescription instructions to GP there and then. I was even able to get her to add 'doesn't need any more Pred she has plenty in stock" (everytime my dose changed I'd get another bag. I have enough to see me to next August!) By the time I phoned Friday they'd ordered the new one in. Rheumy said something about the huge delays with follow up letters but they are trying something new that might help. That might be this. Still a detailed follow up letter will happen but this gets the actions quicker. Time will tell I guess 🙏. Enjoy the rest of your Sunday
Yes, I remember that single, integrated system being investigated - that was before I retired from the NHS 16 years ago, so maybe 20 years ago! 😱 Huge sums of money were spent before the idea was abandoned.
Pity it wasn’t implemented then… it going to cost a lot more now.
As a fellow ex public sector worker we both know how often the wheel gets re-invented! 😂🤣
The survey is very frugal, hardly covers anything tbh.
I have completed survey, but agree it only touches the sides. My surgery has been excellent in the past but recently there seems to have been a total change in attitude. If you get to see GP they are still v good but admin/non existent reception - don't get me started. Not even managed to record vaccinations correctly despite admin in the room when vaccination being administered.
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