My local hospital seems to have stopped doing blood tests, xrays etc. (I am very suspicious and think someone has plans for a housing estate). Has anyone any idea how I can get transport to the large hospital. The bus takes about two hours with various changes, I tried the government’s 750,000 volunteer group, firstly I was cut off and then I was given a charity to try, who it seems do not do help for transport at the moment. I contacted the council’s help line and they suggested People to Places but they have a van that they are not running at the moment. We used to have a local group who helped but most of the volunteers are over 70 and have stopped. I did not want to ask friends as it is quite a distance.
Transport to Hospital: My local hospital seems to... - PMRGCAuk
Transport to Hospital
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piglette
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Once you've sorted out the transportation (sorry, I'm not close enough to help out!) I suggest a letter to the relevant government minister with copies to all the local council and other folk with some semblance of power to influence, as well as to local media. You won't be alone in having been left high and dry over this so I'm sure others will join in complaints about what seems a thoughtless and unwarranted decline in service. Considering that people with both chronic and acute conditions, and all ages, need this service it should not be rendered nearly impossible for some to obtain it.
I have been wondering how to get the people who are in charge to be aware of the total chaos that is meeting people a lot in real need. There was something on Woman’s Hour this morning that people who are totally shielded have had cuts in the visits they have from social services etc and the patient has to buy the PPE for the visitor themselves from Amazon, eBay or wherever. They have not been told what to buy. They then have to look after the PPE at their home. Along with people having trouble getting grocery deliveries, although that seems to be improving, I wonder how many people have died of starvation waiting for their slot. The government did write to 10,000 vulnerable who were dead on the other hand. It really shows up the ineptitude that surrounds us.
A friend went for a coronavirus test yesterday at Heathrow about 20 miles away from her home. She arrived and there was an empty space for about 700 cars with lots of helpers but no one else. She opened her window as you would and was told to shut it. The helper then displayed a message telling her to phone a mobile number which turned out to belong to the person just outside car, goodness knows what you do if you have not got a mobile with you. The helper told her to open the window five inches, which she did, he then threw a test kit into the car, she then had to do the test herself!! Have they not heard of the postal service? It seems if you feel ill, do not rest, but drive off to Heathrow for a test you do yourself.
Perhaps we should make a TV comedy!
Good Lord. You couldn't make that up. I see Mr Bean written all over that sequence. Un-be-liev-able.
"The government did write to 10,000 vulnerable who were dead on the other hand"
You are joking? No - I know you aren't. I despair ...
It was in the press, so possibly true! I can believe it as they just picked up the hospital records initially which probably were not updated that often. Of course they missed out the people who did not go to hospitals, as the GPs might have had more up to date data.
Mind you, over 20 years ago my mother turned up at the GP practice where she had been a regular visitor for some considerable time and was well known. To be told she was dead and her notes had been returned to the central storage place. There was another lady with exactly the same name and DOB - someone hadn't checked the address ...
In 2013 when I was being diagnosed with MS I had loads of tests in hospital (as a day patient) and on my ‘discharge form’ to my GPs It was marked ’deceased’ Luckily I had a copy and noticed so on my next visit to the GP surgery I showed it to then. The doctor was horrified and sent me to reception who looked in their files and said Oh yes! We hadn’t processed it yet but you would have been removed from our files when we did😱.
Hope someone got an earful...
This ISN'T funny - so why did this make me laugh??? It really beggars belief!🧐
Because if you didn't you'd have to cry,
We have to laugh don’t we 😃👍. Actually - That’s my General coping methods in dealing with nasty situations - inappropriate (and often black) Humour- it’s got me into trouble a few times 😂😂😂
I have to be very careful - a lifetime of the NHS and a family full of NHS workers leads to a very strange sense of humour that the majority of the population might not appreciate ...
I’m 100%sure I’d love it 😊 😂
That is ridiculous, a nice story though. I had the situation where they said I was not their patient, probably because I had not visited them for years. They then added me, so I was on the system twice which caused endless admin problems. To get it so I was just one person, they deleted it with all the info which is still inaccessible!
It’s ubiquitous unfortunately- my aunt who had chronic heart problems and attended hospital regularly - had her medical records lost 3 times in 2 different departments in about 3 or 4 years. .. there y missing several appointments and one treatment was very delayed. That was back around 2000 so it’s nothing new unfortunately 🤷♀️
Here we get copies of everything if we request, the doctor writes the letter about an outpatients appointment while you are there and hands it to you. We are encouraged to keep our own records and all the national computer records are linked - my tax return assessing I am on a low enough income to get totally free healthcare shows that fact on the health service computer. It also links that with the car registration records so being a pauper who runs a top of the range Porsche is questioned!!!!
“all the national computer records are linked”
One day the UK may be in that position. During my hunt for a place to go for an xray I found an excellent NHS place in Buckinghamshire about seven miles away and easy to get to. I was told I could not go there as I was not on their computer system and had to go to the area my GP worked and that computer system. This has been my cry for a long time. We need an integrated computer system in UK!
Wasn't that on the menu x years ago? But if you pays peanuts, you tend to get non-human primates ...
To be fair, results from some other hospitals in the region are still couriered. It isn't all the way there yet. But they don't stop you going to them if they are more convenient or have shorter waiting lists.
Some years ago my next door neighbour had an Irish lady staying with her for a few months while she was doing some training. She had the same surname as me with the first name Margaret (I'm Maria) A few weeks after she went home I went to the GP to make an appointment. It was before computers and being asked for your date of birth. Appointment made, I turned up and gave my name. The bossy receptionist said 'But you're Margaret, not Maria'. I said 'I was still Maria when I woke up this morning!' 'Your address is number 8 etc?' 'No, number 7'. Noticing that the notes she was holding were very thin and new-looking, I realised the mistake and said 'That lady was only here for a while. She's gone home to Ireland.' So she searched for my notes and couldn't find them. I said 'They haven't been sent to Ireland in mistake for hers, have they?' 'Oh no, no, that would never happen. We'd never send a patient's notes to another country'. My notes went missing for about 8 weeks, but one day I got a call from the surgery to say they'd located them and unfortunately they'd been very badly misfiled. I still suspect that they went to Ireland and back.
And didn't even send you a postcard!!!!
I had a hospital outpatients appointment. A volunteer came out and called Elaine H - I got up and checked he really meant me and corrected him on the forename, Eileen. "Oh it was near enough ..." he said. No it isn't, check name, surname, address for correctness. From then on calls were for MrsH and I answered and was sent though to another area to wait. Sat there for ages and finally was called in. We had a bit of banter about NHS matter (I was also staff) and then he said "Your Hba1c is fine". So it should be, I'm not diabetic, I said. "You are Marjorie H?" Er, no. The nurses were in a right flutter - because the 2 doctors concerned were pretty strict about such messes. More waiting - finally got the right doctor who greeted me with "It had to be you didn't it!" I believe both concerned with the names mixups were brought up to speed on protocol. But just think - it could have been op and most people would just accept what was being done...
It’s beyond me to understand how our systems are in such a horrific state - but it’s not only NHS - Private companies have mix ups all the time with names, addresses Etc. I’ve had insurance receipts for other people, someone else’s bank statement!!! ... all sorts over the years. Total lack of attention by the staff who type in the data perhaps? Most worrying was a bankruptcy notification for someone (a guy with the same surname) coincidentally with the same street address but in a different town!?! Very worrying and took ages to ensure it wasn’t linked to my credit rating😱. But when you bring it to their attention it’s always someone else’s fault. No accountability ... and Then they bang on about data protection???
Sorry, lockdown is turning me into Victor Meldrew 😳🤪🥴
Don't worry, I would join in too!!!!
in reply to piglette
It is getting ridiculous. In Israel they are going to open stadiums because they have this new spray that will kill covid. How much more bull do we have to hear.
piglette in reply to
Trump has that, he calls it bleach!!!
They use it for chicken too ...
Aaaarg - I’ve just been reading about that this morning. Uk government apparently buckling on banning the chlorinated chicken ?!?
I know - I don't live in the UK and they are very fussy here anyway but even so, I feel very uncomfortable buying chicken. If BoJo and co let bleached chicken or hormone fed other meat in I will become vegan while visiting the UK!
Actually I’m nearly vegan anyway these days - due to my MS diet I don’t eat any meat, chicken Or dairy, although I do eat fish and seafood - so with all the Mercury - I’ll still be doomed 🥴🤪 ... But If I was tempted by chicken at any point it would have to be free range organic etc ... I think they said it would have to be labelled but that’s back to trust again isn’t it - labels are only as trustworthy as the producers and/or their suppliers. As proved by the great adulterated extra virgin olive oil scandals of recent years 😱
No - the daughter and her daughter are vegan and I love some things. But tofu and stuff isn't me. Lots of the vegan stuff is made with wheat - and I'm allergic to something in wheat starch ... Bit limiting!
Nothing is ever simple is it?🥴😳
It's got here now that when I go out to dine I avoid chicken. I get free range chicken sent once a fortnight and it is delicious. Can never understand those who say they cannot taste the difference.
My husband kept asking for roast chicken - at 18 euros for an organic one here in Italy, I was reticent, I'd rather have a decent bit of free range beef! But now the question doesn't arise because since he was ill he eats so little I refuse to eat the rest of a whole chicken when I don't really enjoy it anyway! Did have a very bad experience with an organic one a year or two ago - should have been sold as a boiling chook!
I always remember the very first chicken I cooked after we were married. My parents came and my father refused to eat the chicken on his plate until I had cooked it better. At the time he was 6' 4'' sitting on an orange box because we were short of furniture. The orange boxes were made of wood in those days.
As long as the meat is still moist I do prefer chicken that isn't pink 
that is fair enough - trouble was, my inlaws cooked everything until they were sure it was dead. No leaving lamb rose in the middle, grey and tough all the way through!!! We used to go to the hotel in the village on Easter Sunday for lamb until a new chef said it would be cooked all the way through as that was "how people liked it"! So I did my own. To be fair, people here don't eat lamb a lot so aren't used to it.
My mother was like your inlaws. The problem with lamb that I have is if it is Halal. I will not eat Halal lamb. From what I have read vets here do not approve of how the lambs are killed. It seems cruel to me not to stun the animals. I had a big discussion with a cab driver but he did not change my mind. They do not consider the poor animal.
Why? It's workers who need protection from one another, not the public who are going to cook the chicken anyway to protect ourselves from the other hardier pathogens more likely to be present.
I really couldn't care less who in particular may or may not need protection - since we all do, The use of chlorine to supposedly reduce the pathogens has far more to do with appalling mass farming practices - that actually put the world as a whole at risk because things like Covid-19. It is just the umpteenth run of the twisted use of the world by man to obtain vast amounts of poor quality food that is cheap.
Don’t get me started. ..
And it’s the destruction of the rural camel grazing In the middle east and squashing the camels into sheds that’s been cited as a reason for certain viruses spreading to humans 😱
I wrote this in my blog in 2013:
On a train travelling through the English countryside, the train window framing the scenery. Here is a sky full of bands of dark rain-laden clouds, here a spring green field, and here a horse in a bright blue blanket. The gorse is blooming, and there are many animals: huge numbers of sheep, as though we were shaving the trees from the hills and turning them into sheep, herds of cattle, horses, a few geese. At the edge of the frame two deer bound. I am struck by the patience of the animals. We made a pact with them, which we break when we abuse them, when we refuse to give them a proper life before we use them. Our part of the bargain was to treat them with kindness, shield them from pain and fear, keep them safe from wolves and starvation, providing a good and painless death whereupon they would become part of the human substance. How we have betrayed these creatures!
So sad but true. I did eat meat (albeit free range) until about 7years ago and still have farming friends who breed animals for meat - free range and humanely- It’s the intensive stuff that makes my heart bleed and my blood boil - not only is it so inhumane for the animals, But the food produced is bad for humans, The methods are bad for the planet and, more relevant for the zeitgeist, can well be the cause of facilitating various viruses etc that have been around - harmless to us for millennia -that can transmit via intensively reared animals to humans, though the malpractice of animal husbandry and - without too much of a stretch - can believably end up causing a global pandemic like this .... it’s all good for thought when you delve into it ... oh for heavens sake, I’m ranting again - I really must get off the wine - it’s not too good to over indulge in Vino whilst on PRED for PMR is it??😳
Not just viruses. Remember CJD.😥
One specific type, vCJD. CJD isn't the only disease passed on via use of tissues of various sorts and not only from using animals with BSE.
"... transmission may occur during the use of human growth hormone or during procedures that involve affected brain or nervous system tissue. These procedures may include:
corneal transplantation
electrode implantation
meningeal graft, a graft of the outer coating of the brain
Fewer than 1% of CJD cases are acquired."
Agreed. There is a reason I don't eat meat.
This is exactly how it is, I did a test in Ironbridge Shropshire 4 weeks ago run by army staff, which came back negative. It was hard trying to swap the back of your throat yourself.
I am a childminder in my own home reopening for key workers and have a bad headache therefore I took another text at home. This was easy to get on the Government website for any key worker or vulnerable person.
Also negative therefore I have had ERS blood levels checked. It was only 27 and my doctor said not much change from the last one, I told the doctor there will not be much change as I only ever have a blood test when I am having a flare of pain.
Do others fine there doctors don’t have much knowledge of GCA?
She has upped my steroids from 51/2 to 10mg for a week then 9mg for 3 days 8mg for 3 days and 7mg for 3 days then if my pain is stable I can have another blood test.
X
"Do others fine there doctors don’t have much knowledge of GCA?"
Most people find their GPs know little - it is a rare disease and most doctors might only see a few cases in a lifetime of practice. It is also something that belongs in the hands of specialists - not like PMR which is perceived as something for the GP. Although a group of top PMR specialists were saying at a PMRGCA workshop yesterday that it would be very helpful in the hunt for better ways of managing PMR and development of drugs if ALL PMR patients could have a fast-track access to a specialist so they could be included in trials BEFORE they are started on any form of corticosteroid dose.
piglette where are you located and who is your MP?
I did look on your profile, but it is sparse. Perhaps a bit more info please?
Theresa May MP
Email her and ask for a lift
As Pmrpror she has an email address and also a constituency office and staff (about 3) get cracking and make her do some work for you and Alternatively as both PMRpro and Heron have given advice...............I would only add "Teresa a Rolls Royce with a bar will do. please.
The other thing is your local Council has a Public Health Service, England person, who you are able to contact via your local Council swbd, or Councillor and aks the question re your situation and see how high they jump........just add 'I think I will contact my local radio station'.
I actually know her quite well, she even calls me by my nickname! She does not live in the constituency though. Local radio is not that brilliant, I had thought of one of the radio programmes like You and Yours, people should be made aware what is happening. The Public Health Service is actually part of the NHS and test things such as viruses. I have contacted the council Convid-19 help service, they phoned back and were very nice but did not know much. We keep being told how wonderful things are and everything is crystal clear. The MPs did not even understand the way they were supposed to vote and had a half kilometre queue. Everything is spin.
It's a real shame if your local radio is not up to much. 5live and local radio have often been able to find solutions to problems like yours in a very short time. I think most local radio have slots with relevant info every hour, certainly in the am. Perhaps give them a ring? I would also follow Jinsac's and pmrpro's advice of contacting MP. She may like to sort it and show Boris what a shambles it all is!!
I have got a friend to help in the end in spite of the distance..
DorsetLadyPMRGCAuk volunteer
You should be able to book in through your GP or the hospital. I say SHOULD - in normal times, not sure what the situation is now.
Try GP or PALS at hospital (find details on hospital web site) - sure they can advise - that’s what they’re there for!
I think I will go back to my GP, they will love me.
They get paid for looking after you, let them. I think most are relatively quiet at the moment,
You should read the BMJ! They are worked out of existence, writing up rules, checking rules, reading rules.....
.... but not seeing as many patients as usual.
Our lot had reduced their week to 23 hours before coronavirus as they were all so stressed, so stressed in fact that they chill out by being private GPs in the spare time!
Mmmm!
I have been saying for ages that the people who need these services are getting missed out and the fact that visits are being cancelled and no one seems to know rgo will do what us making the stress for people even worse. Have you tried social services? I know that poops was contacted by them and was offered help and also prescription collection. Just a thought but you have nothing to lose. YBB
You are right, some people must be in dire straits.
Prescription collection and grocery collection are fine. Several places offer it around here. I think it is insurance and PPE that is the problem for hospital visits. I did contact the council on their Covid-19 help line and they were very friendly and pointed me towards a charity, who I discovered did not do it!
It's the fact that people who need help are not getting it that annoys me most. If you have no family or friends to help and were relying on the council etc they really must be desperate. I know social services have helped with transport her but not sure who qualifie. Maybe if you ring them they may be more aware of who is doing transport. They go on about sheilding but they dont make it easy for some people. Let us know if you have any luck as it will no doubt be useful for othersxxYBB
A friend has now kindly offered to take me although it is quite a drive. It does open your eyes to the problems some people are facing though.
Thought I had replied to you earlier so sorry a bit late responding! Glad you have got soneone to help. I know it's hard asking friends to do stuff but these ard strange times. Hope trip goes ok.xxx YBB
I have read all of the above and find it deeply depressing. I completely understand the distress and frustration caused when faced with having to find ways of solving all sorts of problems that have arisen in this dreadful lockdown period, but I think that there is a huge underestimation of the complexity that so many sections of the government, the NHS and scientists face as they try to deal with millions of people , each with individual
needs .We have become so used to expecting our problems to be solved by other people , but as David Blunkett ( ex labour health minister) recently said we have to try and work together in a positive frame of mind in order to find ways to address situations in a war in which we still do not fully understand the enemy.
I am 80 years old, have recently been unwell , but have received excellent safe care from what I know is a very overstretched surgery .The Dr’s are certainly not sitting around twiddling their thumbs or working privately.
Please be brave, pluck up courage and ask your friends to help if possible. There are many out there who would be pleased to feel they are being useful .
Timy-tim
A friend has offered to take me after all this effort. I do not like to ask as this hospital is quite a distance.
Real friends don't mind - if I weren't so far away I'd have taken you! Here, of course, it would be a wonderful excuse to get out together - though you would have to sit in the back, diagnonally opposite from my in the driving seat, and we'd both have to wear face coverings!
It is asking someone that is difficult, my friends have been fantastic, particularly as you feel that the facilities are around to help, well at least I thought so.
Have you tried your local Community Transport charity?
Yes we have one for our village, but they have not got drivers at the moment it seems, they are all over 70 and are staying at home.
This makes me realise how lucky I am that I can have my blood tests at my local GP surgery yesterday their phlebotomist. I also know that my Doctor is happy to do a blood test as she did once as I was there with her.
I had a blood test yesterday at my GP's surgery and one 8 weeks ago. Both were for my Rheumatologist in the neighbouring city. They posted me a (hospital) blood form to give to the Practice Nurse and the results will go back to my Rheumatologist, rather than back to the GP.
I checked all this out with the Practice Nurse, before lockdown and she said it would be no problem. I know this arrangement worked, as I've spoken about the result of the first test.
Best wishes.
I am fortunate to live in a London Borough: it could be very different for others. We have several blood test venues. My own surgery no longer does them but other surgeries nearby do. You could try to tap into one of those in your area if it is similar to mine? What about pharmacies; I think some do blood tests?
Hope you get sorted; it isn't easy, is it?
It must be so difficult for people who have confusion or even dementia. Like most people here, I suspect, I would be considered to be a bit above average intelligence but I even get a bit confused over all the pills I have to take and, to support a suggestion above, I suspect that my GP is not up-to-speed on PMR (let alone GCA) and he certainly finds difficulty in keeping his 'paperwork/admin' up to date. To misquote from my days as a Bible person: 'Patient, heal thyself'.
Can you not try community transport, we use to use these when my late husband had to go to appointments
It must vary from area to area but on my last appointment letter, last week, a list of transport options was listed.
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