It is alarming that two people like yourself and Diane who are so tech savvy and generally clued up were pushed around from pillar to post. Imagine being old and alone and encountering all this mayhem.
So sorry about the fall and hope you are now on the path to recovery.
You are spot on with communication. Doctors (mostly) seem to be culturally unable to communicate with patients and, almost more so, between themselves. The systems seem terrible, there is no overlap within institutions and woe betide you if more than one institution is involved.
One of the problems is that the patient is not valued (resulting in misallocation of resources) and often has no idea what is going on. This is much worse if the patient is really unwell or elderly and does not have someone to help navigate the system on their behalf. Doctors are often individually defensive, but this is nothing compared to the NHS as a whole.
The system does not listen to the patient. 'Letters' are a disgrace, taking weeks to arrive in some cases (the NHS must be the biggest user of the postal system!).
The NHS app is, as you say, a useful conduit and needs to be enlarged upon. The patients need to own their data, which would get around a lot of the privacy concerns. There is so much to be done!
Here's hoping you recover quickly now. What stands out to me in your story is that you and the Prof were very proactive in trying to find out what was going on and that probably got you treated more quickly albeit with the delays you encountered. Many patients, particularly older ones and people with extra difficulties like Parkinson's aren't able or haven't the confidence to make those phone calls and send those e-mails and I fear for them that they might become victims of "Parkinson's related complications" instead of recovering quickly from a fall. All the best to you.
Absolutely. I also had the benefit of advice from a dear friend who is an NHS consultant. And what you say about Parkinson's is spot on - my real fear was that I would get into a vicious circle with the stress worsening my tremor and the tremor delaying my rehab from the elbow injury
It’s so hard to tell, when things go wrong in our lives, if the worsening of Parky symptoms signals a permanent decline or just a glitch. Five months ago I was in a bad way – a protracted, complicated conveyance and house move had taken all the wind out of my sails. I hadn’t experienced symptoms that bad, and I feared this was a permanent change.
Now with the anxiety lifted, a tweak of meds and a little routine restored to my life, I am feeling brighter and clearer than I have in more than a year. I’m ready to challenge your notion of a Parkinson’s Ladder of Decline, and urge you to rebrand it as a Snake. For me, the Ladders are the goodies and they only take me in one direction - up.
Your slippery hissy nemesis was a fallen branch; mine an unpleasant vendor at the end of a property chain. Let’s throw the die again and keep throwing till we reach the bottom of another Ladder. Upwards and upwards!
I’m glad you’re now sorted and on the road to recovery Rory. It truly sounds like a rocky road over the last week or so. Your experience about disconnects resonates with me (although not on such a dramatic basis), and I’m sure many others. It’s sad how such a once great institution has been managed into a sprawling mess and especially that the apparent panacea of technology hasn’t improved things.
I have the NHS app here in Wales, but just about all I can do with it is reorder my prescription. I’d love to be able to see my blood results etc but can’t. Just assume they’re ok unless I get a call from the surgery.
Thank you for writing this Rory and so sorry you’ve had such a difficult experience but it is all too familiar with anyone who has to deal with the NHS on a regular basis. I received a text yesterday from my local hospital trust asking if I still wanted to be on the waiting list for a long standing outpatient appt! I have MS and had surgery with it so understand your journey so far. Good luck with accessing physio and your rehab - will be interested to read that part of your journey too. In the meantime enjoy your time with Sophie, the Prof and those lovely breakfasts!
Glad you’ve finally got there!! Unfortunately your tribulations sound very familiar and sad to hear things have got no better since I was dealing with my elderly, frail parents’ many times in hospital ten years ago. Precise, clear and reliable communication is fundamental. It saves staff time, bed blocking and patient confidence (which ultimately speeds recovery). In a true emergency, treatment is obviously better organised. But the vast majority of hospital patients are being traumatised by this disorganised fiasco EVERY TIME! Until eventually, eventually someone grabs the bill by the horns, deals with it and hey presto you’ve been fixed.
We hear so much in the states about how free healthcare is the way to go! It seems in the UK, with all of its foibles and tedious intersections of contact and wait times, one still walks away without a humongous hospital bill. I say that’s a win!
Here in the states, the admittance and discharge program is pretty much the same with long wait times and unending paperwork. The emergency rooms are no better. Show up at a Catholic run ER and you are sure to wait hours to be seen with so many undocumented migrants filling the seats in waiting rooms. Here they receive “free” healthcare, well, the citizens of our country pay for theirs through our health insurance, taxes, and the final bill we receive when our own medical services are finally rendered.
After experiencing the medical swamp in the state for over sixty years, starting when I was born with a dislocated hip, I agree that the actual individuals who care for us and treat us are mostly quite capable professionals who see themselves as serving a greater cause, though much can be said for the totality of the machine that cares not one wit about us as individuals when we find ourselves in desperate need of medical care.
Nothing will or can change unfortunately. Much like our governments, pure greed rules the world. It’s not about the individual person, it’s about parties and profit.
Welcome to the left behind club. I’m sorry you have found yourself in it!
You are absolutely right to highlight these problems. I was kept at Ealing Hospital for 2 weeks awaiting a bypass operation at Hammersmith. The doctors, rightly, advised that I was more likely to be scheduled an operation if I stayed in hospital, rather than go home. So I blocked a bed for 2 weeks, when I could easily have been waiting at home.
Another issue, that you don't highlight, is the extraordinary amount of note taking by doctors and nurses. The next shift doesn't have time to read and absorb the notes, so the effort is wasted. Having observed doctors during my hospital stay, I'd say they spend more time in front of the PC screen, than by patients.
Finally, there's no route for proper feedback. Any feedback is considered to be a complaint and staff are very defensive - rightly as it can affect their careers etc.
Glad to hear you are on finally on the mend. Communication is the key to any smooth running organisation. I have four different digital portals where one should be enough and I still get a hard copy posted to me. I am so grateful for to the NHS and the hard working staff, but so much more time and money could be better used by making simple changes to systems.
What a dispiriting series of events and so draining when you are battling the shock and pain of an injury like yours. I fear your experience will have been far from unique. All best wishes for the recovery.
Thank goodness i jumped before i was bumped! I have been living in Portugal since 1997 and not only do we get our 300 days p.a. of free vitamin D but the SNS (Servicio Nacional de Saude) is on the ball and calls you in regularly for consultations, vaccines etc. Also Private Health can be insured at a reasonable rate as long as you entered the system before the age of 70. Your ship appears to be near sinking!
Rory, I’m very sorry that you went through all this, but not surprised.
I’ve heard stories like this many times from family and friends for many years and all along we’ve been saying it’s about Communication.
It causes much anxiety for the patients and their families during an already difficult and stressful time and I’m sure this is detrimental to one’s mental and physical wellbeing.
Surely it doesn’t cost much to communicate accurately and effectively. I have never understood why this hasn’t been addressed.
Having said all this, when treatment finally happens it is usually first class, our medical professionals are marvellous.
Had a very similar scenario with my 16 year old daughter last December. She shattered her first and second metatarsals in her foot and broke her collar bone. She was admitted at 1am after a long wait in the trolley queue in the corridor of A&E but to an old people’s orthopaedic ward at the Royal Surrey. Quite traumatic for her to be surrounded by shouting & disturbed old ladies. The upshot was after two days wait she was discharged on morphine with her foot in plaster, with little indication of when she would be operated on. We were driven to take the private surgeon route as we were worried that she would not be operated on before Christmas and the amount of pain she was in. Like you it was almost impossible to find the right people to talk to once you are discharged. Also once we mentioned private healthcare through desperation- everyone stopped caring about a young girl whose apprenticeship depended upon her having a healthy foot.
It is alarming that two people like yourself and Diane who are so tech savvy and generally clued up were pushed around from pillar to post. Imagine being old and alone and encountering all this mayhem.
So sorry about the fall and hope you are now on the path to recovery.
You are spot on with communication. Doctors (mostly) seem to be culturally unable to communicate with patients and, almost more so, between themselves. The systems seem terrible, there is no overlap within institutions and woe betide you if more than one institution is involved.
One of the problems is that the patient is not valued (resulting in misallocation of resources) and often has no idea what is going on. This is much worse if the patient is really unwell or elderly and does not have someone to help navigate the system on their behalf. Doctors are often individually defensive, but this is nothing compared to the NHS as a whole.
The system does not listen to the patient. 'Letters' are a disgrace, taking weeks to arrive in some cases (the NHS must be the biggest user of the postal system!).
The NHS app is, as you say, a useful conduit and needs to be enlarged upon. The patients need to own their data, which would get around a lot of the privacy concerns. There is so much to be done!
Here's hoping you recover quickly now. What stands out to me in your story is that you and the Prof were very proactive in trying to find out what was going on and that probably got you treated more quickly albeit with the delays you encountered. Many patients, particularly older ones and people with extra difficulties like Parkinson's aren't able or haven't the confidence to make those phone calls and send those e-mails and I fear for them that they might become victims of "Parkinson's related complications" instead of recovering quickly from a fall. All the best to you.
Absolutely. I also had the benefit of advice from a dear friend who is an NHS consultant. And what you say about Parkinson's is spot on - my real fear was that I would get into a vicious circle with the stress worsening my tremor and the tremor delaying my rehab from the elbow injury
Hi Rory
It’s so hard to tell, when things go wrong in our lives, if the worsening of Parky symptoms signals a permanent decline or just a glitch. Five months ago I was in a bad way – a protracted, complicated conveyance and house move had taken all the wind out of my sails. I hadn’t experienced symptoms that bad, and I feared this was a permanent change.
Now with the anxiety lifted, a tweak of meds and a little routine restored to my life, I am feeling brighter and clearer than I have in more than a year. I’m ready to challenge your notion of a Parkinson’s Ladder of Decline, and urge you to rebrand it as a Snake. For me, the Ladders are the goodies and they only take me in one direction - up.
Your slippery hissy nemesis was a fallen branch; mine an unpleasant vendor at the end of a property chain. Let’s throw the die again and keep throwing till we reach the bottom of another Ladder. Upwards and upwards!
Poor communication extends to the outpatient setting. Best practice is for the hospital doctor to write a letter directly to you, the patient, and copy it to your GP. This practice is endorsed by all the professional bodies and the government has committed to implementing it as routine. https://www.gov.uk/government/publications/government-response-to-the-independent-inquiry-report-into-the-issues-raised-by-former-surgeon-ian-paterson.
Sadly it is still the exception and the voice of the patient is too weak to drive change.
I hope you do receive a letter written to you but if you don’t, don’t hesitate to ask for it.
Glad you’re all sorted Rory, and yes, having worked in it for a long long time, you’ve just described the NHS very well!
I’m glad you’re now sorted and on the road to recovery Rory. It truly sounds like a rocky road over the last week or so. Your experience about disconnects resonates with me (although not on such a dramatic basis), and I’m sure many others. It’s sad how such a once great institution has been managed into a sprawling mess and especially that the apparent panacea of technology hasn’t improved things.
I have the NHS app here in Wales, but just about all I can do with it is reorder my prescription. I’d love to be able to see my blood results etc but can’t. Just assume they’re ok unless I get a call from the surgery.
Thank you for writing this Rory and so sorry you’ve had such a difficult experience but it is all too familiar with anyone who has to deal with the NHS on a regular basis. I received a text yesterday from my local hospital trust asking if I still wanted to be on the waiting list for a long standing outpatient appt! I have MS and had surgery with it so understand your journey so far. Good luck with accessing physio and your rehab - will be interested to read that part of your journey too. In the meantime enjoy your time with Sophie, the Prof and those lovely breakfasts!
Glad you’ve finally got there!! Unfortunately your tribulations sound very familiar and sad to hear things have got no better since I was dealing with my elderly, frail parents’ many times in hospital ten years ago. Precise, clear and reliable communication is fundamental. It saves staff time, bed blocking and patient confidence (which ultimately speeds recovery). In a true emergency, treatment is obviously better organised. But the vast majority of hospital patients are being traumatised by this disorganised fiasco EVERY TIME! Until eventually, eventually someone grabs the bill by the horns, deals with it and hey presto you’ve been fixed.
We hear so much in the states about how free healthcare is the way to go! It seems in the UK, with all of its foibles and tedious intersections of contact and wait times, one still walks away without a humongous hospital bill. I say that’s a win!
Here in the states, the admittance and discharge program is pretty much the same with long wait times and unending paperwork. The emergency rooms are no better. Show up at a Catholic run ER and you are sure to wait hours to be seen with so many undocumented migrants filling the seats in waiting rooms. Here they receive “free” healthcare, well, the citizens of our country pay for theirs through our health insurance, taxes, and the final bill we receive when our own medical services are finally rendered.
After experiencing the medical swamp in the state for over sixty years, starting when I was born with a dislocated hip, I agree that the actual individuals who care for us and treat us are mostly quite capable professionals who see themselves as serving a greater cause, though much can be said for the totality of the machine that cares not one wit about us as individuals when we find ourselves in desperate need of medical care.
Nothing will or can change unfortunately. Much like our governments, pure greed rules the world. It’s not about the individual person, it’s about parties and profit.
Welcome to the left behind club. I’m sorry you have found yourself in it!
You are absolutely right to highlight these problems. I was kept at Ealing Hospital for 2 weeks awaiting a bypass operation at Hammersmith. The doctors, rightly, advised that I was more likely to be scheduled an operation if I stayed in hospital, rather than go home. So I blocked a bed for 2 weeks, when I could easily have been waiting at home.
Another issue, that you don't highlight, is the extraordinary amount of note taking by doctors and nurses. The next shift doesn't have time to read and absorb the notes, so the effort is wasted. Having observed doctors during my hospital stay, I'd say they spend more time in front of the PC screen, than by patients.
Finally, there's no route for proper feedback. Any feedback is considered to be a complaint and staff are very defensive - rightly as it can affect their careers etc.
Glad to hear you are on finally on the mend. Communication is the key to any smooth running organisation. I have four different digital portals where one should be enough and I still get a hard copy posted to me. I am so grateful for to the NHS and the hard working staff, but so much more time and money could be better used by making simple changes to systems.
What a dispiriting series of events and so draining when you are battling the shock and pain of an injury like yours. I fear your experience will have been far from unique. All best wishes for the recovery.
Thank goodness i jumped before i was bumped! I have been living in Portugal since 1997 and not only do we get our 300 days p.a. of free vitamin D but the SNS (Servicio Nacional de Saude) is on the ball and calls you in regularly for consultations, vaccines etc. Also Private Health can be insured at a reasonable rate as long as you entered the system before the age of 70. Your ship appears to be near sinking!
Rory, I’m very sorry that you went through all this, but not surprised.
I’ve heard stories like this many times from family and friends for many years and all along we’ve been saying it’s about Communication.
It causes much anxiety for the patients and their families during an already difficult and stressful time and I’m sure this is detrimental to one’s mental and physical wellbeing.
Surely it doesn’t cost much to communicate accurately and effectively. I have never understood why this hasn’t been addressed.
Having said all this, when treatment finally happens it is usually first class, our medical professionals are marvellous.
Had a very similar scenario with my 16 year old daughter last December. She shattered her first and second metatarsals in her foot and broke her collar bone. She was admitted at 1am after a long wait in the trolley queue in the corridor of A&E but to an old people’s orthopaedic ward at the Royal Surrey. Quite traumatic for her to be surrounded by shouting & disturbed old ladies. The upshot was after two days wait she was discharged on morphine with her foot in plaster, with little indication of when she would be operated on. We were driven to take the private surgeon route as we were worried that she would not be operated on before Christmas and the amount of pain she was in. Like you it was almost impossible to find the right people to talk to once you are discharged. Also once we mentioned private healthcare through desperation- everyone stopped caring about a young girl whose apprenticeship depended upon her having a healthy foot.