Holy shit. I am so sorry you have to deal with this on top of everything else. Private equity and healthcare do not mix. I am familiar with the brick wall.
Although I definitely share your outrage at the state of things, l was really pleased to read your article. You're a true activist for the disabled (l'm in the club, too). Having followed your journey from the beginning, it was also great to see the photo of you at home looking great and wuth a big smile. I hate to say this, Paul, but you're an utter inspiration! 😁
Oh, Paul! How rotten, wrong and frustrating. Thank you for continuing to share your personal story and bring to light the things that should, and must change in the healthcare system to lighten the tremendous and unfair burden on the most vulnerable.
A silver lining is that through your generous writing about your daily trials you bring to light what's happening with so many who suffer similarly.
And perhaps those folks, if they read your articles, don't feel quite as alone and isolated in their terrible suffering.
As this year comes to a close, I wish you miracles of unexpected joy and light and love in the new year.
Thank you again for sharing your life experience with your readers.
In the seventies, we lived in a third world country and, despite loving much about it, when we came home we always sighed with relief and being in a country where government organisations were reliable and bureaucracy was easily navigated. We reminisced about the difficulty of doing the most ordinary things done in Ghana, like getting a driving licence or a phone line or finding a doctor or dentist. Forms would go missing, telephone calls unanswered and so on.
Now Britain has all the characteristics of a third world country: no accountability, government organisations clearly not working for the customer, lack of trust everywhere. Only rich people can make the system work for them, or get what they want or need. It is so sad.
Kafkaesque in the extreme. Would love to know the qualifications and professional experience of the Clinical Lead you had the misfortune of being ‘helped’ by.
If only Wes Streeting would get these useless monsters out of the service provision, along with child and elderly care. Wasn’t the argument always that ‘private can do better because they’re motivated to be agile and efficient’?
ugh, this is so disgusting and infuriating. how can those fuckers LIVE with themselves?? I really hope this story gets seen by the right eyes and something is finally done. great writing as always Paul
Infinite screaming. What the hell is wrong with these people? OK, don't answer that. It's money. It's obscene profit. But also companies not wanting to pay well enough to hire people who are knowledgeable or willing to learn how to get better at helping people . . . and to keep them employed with you because it's a good place to work and they KNOW they are providing good service. Oof, sorry -- I'm in the US and our health care is more messed up than even what you described but the whole thing about "it depends on where you live and if you have money" is definitely the same. And in the US, "health care" companies make obscene profits. I know from experience.
Thank you for insightful commentary and analysis of health care privatization, which affects us all - positively if we have invested it in the "right" companies. Come to think of it, my broker did recommend a couple of health care companies...
You sir, are a terrific writer with a remarkable ability to bring the reader into a world previously unknown to them so that they not only gain understanding but also feel like they’ve participated in that world.
I came across the extracts from your diary in the guardian today, and wondered if you have ever encountered the concept in trauma psychology of a foreshortened future? Your description of having felt like the ‘real’ you had died resonated with me. I have found it a helpful concept to articulate to myself and others what ‘outliving yourself’ after the loss of your prior projects and identity feels like.
Thank you again for illuminating one of the many trials of being confined to a wheelchair in a world that has been screwed by greed. Private equity has gutted so many necessary services. It's criminal and must be regulated. In any case, I'm glad you are able to rely on small business and friends to cope.
My father was a quad for twenty years, starting at age 50. He broke his neck building his dream house. I was just a tweener, an only child, when the shit hit the fan. I can only recall a few instances of him getting the run around, but I'm sure there were many. His ordeal proves to me that he was the strongest man alive for putting up with the aggravation.
Your article brings it all back for me and for that I am thankful.
Holy shit. I am so sorry you have to deal with this on top of everything else. Private equity and healthcare do not mix. I am familiar with the brick wall.
Dear Paul,
Although I definitely share your outrage at the state of things, l was really pleased to read your article. You're a true activist for the disabled (l'm in the club, too). Having followed your journey from the beginning, it was also great to see the photo of you at home looking great and wuth a big smile. I hate to say this, Paul, but you're an utter inspiration! 😁
Sending love, Sarah
Oh, Paul! How rotten, wrong and frustrating. Thank you for continuing to share your personal story and bring to light the things that should, and must change in the healthcare system to lighten the tremendous and unfair burden on the most vulnerable.
A silver lining is that through your generous writing about your daily trials you bring to light what's happening with so many who suffer similarly.
And perhaps those folks, if they read your articles, don't feel quite as alone and isolated in their terrible suffering.
As this year comes to a close, I wish you miracles of unexpected joy and light and love in the new year.
Thank you again for sharing your life experience with your readers.
Namaste
In the seventies, we lived in a third world country and, despite loving much about it, when we came home we always sighed with relief and being in a country where government organisations were reliable and bureaucracy was easily navigated. We reminisced about the difficulty of doing the most ordinary things done in Ghana, like getting a driving licence or a phone line or finding a doctor or dentist. Forms would go missing, telephone calls unanswered and so on.
Now Britain has all the characteristics of a third world country: no accountability, government organisations clearly not working for the customer, lack of trust everywhere. Only rich people can make the system work for them, or get what they want or need. It is so sad.
Kafkaesque in the extreme. Would love to know the qualifications and professional experience of the Clinical Lead you had the misfortune of being ‘helped’ by.
If only Wes Streeting would get these useless monsters out of the service provision, along with child and elderly care. Wasn’t the argument always that ‘private can do better because they’re motivated to be agile and efficient’?
ugh, this is so disgusting and infuriating. how can those fuckers LIVE with themselves?? I really hope this story gets seen by the right eyes and something is finally done. great writing as always Paul
Infinite screaming. What the hell is wrong with these people? OK, don't answer that. It's money. It's obscene profit. But also companies not wanting to pay well enough to hire people who are knowledgeable or willing to learn how to get better at helping people . . . and to keep them employed with you because it's a good place to work and they KNOW they are providing good service. Oof, sorry -- I'm in the US and our health care is more messed up than even what you described but the whole thing about "it depends on where you live and if you have money" is definitely the same. And in the US, "health care" companies make obscene profits. I know from experience.
Thank you for insightful commentary and analysis of health care privatization, which affects us all - positively if we have invested it in the "right" companies. Come to think of it, my broker did recommend a couple of health care companies...
You sir, are a terrific writer with a remarkable ability to bring the reader into a world previously unknown to them so that they not only gain understanding but also feel like they’ve participated in that world.
I came across the extracts from your diary in the guardian today, and wondered if you have ever encountered the concept in trauma psychology of a foreshortened future? Your description of having felt like the ‘real’ you had died resonated with me. I have found it a helpful concept to articulate to myself and others what ‘outliving yourself’ after the loss of your prior projects and identity feels like.
I haven't come across that, but would certainly be interested to hear more
Brilliant article, you'd be a great mp
No doubt wouldn't be able to navigate the palace of Westminster in a wheelchair
https://en.wikipedia.org/wiki/Anne_Begg
Great article about a ludicrous situation. Thank you and thank goodness for your private physio. NHS: SOS.
Just brilliant, thanks for writing and for sharing. Glad The Guardian picked it up.
Unbelievable! It really is only about the bottom line these days 😭
Thank you again for illuminating one of the many trials of being confined to a wheelchair in a world that has been screwed by greed. Private equity has gutted so many necessary services. It's criminal and must be regulated. In any case, I'm glad you are able to rely on small business and friends to cope.
My father was a quad for twenty years, starting at age 50. He broke his neck building his dream house. I was just a tweener, an only child, when the shit hit the fan. I can only recall a few instances of him getting the run around, but I'm sure there were many. His ordeal proves to me that he was the strongest man alive for putting up with the aggravation.
Your article brings it all back for me and for that I am thankful.