gintonic
50 shades of grey pussy cats
only one thing better he'll like - a THFC card
Jack Barron (Go Fund Me)
- Thread starter Tony L
- Start date
only one thing better he'll like - a THFC card
Marchbanks
Hat and Beard member
Whaleblue
Southbound
Thanks, useful. Still a couple of hours to use this if anyone wants to get a card to Jack by Tuesday.
Mullardman
Moderately extreme...
Moonpig also useful for forgetful last minute types like me. Card sent.
Mullardman
Moderately extreme...
Has anyone had any feedback on how Jack's Birthday went?
Received this yesterday, I presume that everyone who contributed received this?
Anyway here you go guys.
*Starts*
Helen has sent you a thank you for donating to Help Jack Barron recover from Vasculitis
Dear Tony. Please forgjve me for taking so long to get in touch and thank you. All Jacks Pink Fish Media friends have been fantastically supportive! Its been such a rollercoaster this year helping Jack to get the best care and what he needs- which wouldn’t have been possible without your support. This is so kind of you! Thank you so much for your donation. It’s much appreciated. We have been able to make a huge difference to Jack’s quality of life with your help. I hope life is treating you well - best wishes Helen
To respond to Helen Mead, you can reply directly to this email.
Anyway here you go guys.
*Starts*
Helen has sent you a thank you for donating to Help Jack Barron recover from Vasculitis
Dear Tony. Please forgjve me for taking so long to get in touch and thank you. All Jacks Pink Fish Media friends have been fantastically supportive! Its been such a rollercoaster this year helping Jack to get the best care and what he needs- which wouldn’t have been possible without your support. This is so kind of you! Thank you so much for your donation. It’s much appreciated. We have been able to make a huge difference to Jack’s quality of life with your help. I hope life is treating you well - best wishes Helen
To respond to Helen Mead, you can reply directly to this email.
Yeah I received one too. It's a nice touch considering her focus is on Jack
Mullardman
Moderately extreme...
Me too. I didn't donate as I couldn't get the system to work, but I did send a card and a small gift.
Hi guys, here's the latest update on Jack from Helen.
I'm in tears reading this, it's so sad.
There's some photos in the link below too or maybe someone can post those here.
Thanks
Tony
https://www.gofundme.com/f/help-jack-baron-recover-from-vasculitis?viewupdates=1&rcid=r01-163714914229-ca3c3ca838bf40ca&utm_medium=email&utm_source=customer&utm_campaign=p_email+1137-update-supporters-v5b
Yesterday by Helen Mead, Beneficiary
Hi Everyone and thanks for your continued support - I can’t believe it’s three months since my last update - so much has happened and there is so much to share and do.
Firstly I want to say another thank you! It was unbelievably lovely to find so many cards and gifts for Jack when I spent the day with him on his birthday in August. I brought cake - a huge chocolate mousse one from Paul’s -that fed the rest of the ward and staff- and coffee of course, and he had lots of FaceTime calls with friends before we finished everything off with his favourite Honest Burger - courtesy of Alex at the Hammersmith Branch - who was taking Jack a cheeseburger meal weekly for all of the time he was able eat one! One of Jack’s angels - Alex is an amazing guy!
At the time Jack was having long term
treatment - in an acute medical ward- as he wasn’t strong enough for rehab - with a cocktail of antibiotics for his chest - the site of multiple infections since before and after he contracted Covid in the hospital earlier this year.
The best news is that just within the month Jack was medically stable for the first time since his admission -and as soon as he was out of danger he was transferred out of hospital to a care home.
Moved mid-September- Roger and I were able to take Jack outside in his wheelchair and sit in the garden - where he had the sun on his skin for the first time in over 11 months.
You can’t believe what an amazing moment this was - I felt like we’d made it too the top of Everest!
Jack basked in the sun! I was concerned that after that long time inside he’d react like a vampire and want the shade! He loved it and was able to have lunch outside too.
I’d like to say he had fresh air too- but we were in Acton- but the sky was blue, there were flowers and trees and we could pretend to be wherever we wanted to be.
It’s still a huge improvement on the recycled air of a hospital ward.
After a big chat about his time at the Isle of Wight festival when he was 16 and saw Jimi Hendrix it was just heartbreaking when we had to leave and bring him back inside - where he viewed the other residents in the care home lounge with much curiosity- not quite sure where or why he was keeping such company. This home is very much set up for end of life and dementia care. Especially a strange juxtaposition after the memories of the festival.
Back in his room we left him happily watching the new BBC Nirvana documentary featuring lots of friends and colleagues over the years. It’s so good that through the iPad we are able to keep him connected to the world he knew so well and loves so much.
Although stable he still requires 24 hour medical care and although the ward manager at Charing Cross Hospital said the nursing home shouldn’t be seen as a “final destination” (he will be reassessed after 6-8 weeks to make sure it best meets his needs - which is a process that is happening as I write).
It is no doubt preferable that he is out of hospital and has his own room with a garden view - and I hate to say it....
But here there is a distinct lack of the care he saw in hospital - despite being assured of the contrary there are no provisions for rehab or physio - and the staff unfortunately are unable to even keep his iPad charged or at times even know how to plug it in!
This is a huge blow to our expectations and hopes for Jack’s trajectory for recovery and we fail to see how he will ever get out of bed on his own again unless these opportunities are provided. Every day is critical.
We are determined that Jack isn’t allowed to fall through the cracks in the system and gets the care he needs and has the right too!
We have asked his new GP at the centre to refer him for physio and have been told it could be up to 8 weeks until he is even assessed for this and then it would only be weekly sessions. This has been and gone and we are still waiting for it too happen - alongside him being referred to an occupational therapist and social worker.
I have brought in a private physio who has been working with him 2-3 times a week so his body doesn’t continue to decondition anymore; and a friend and colleague, Paul, who is also a personal trainer has also donated his time two Saturday mornings to do some exercises with him.
We are desperate to get Jack out of this home and somewhere more appropriate for his needs ASAP. Ideally he would be having physio rehab daily - even twice a day. He has the strength and the ability - he just needs the guidance to get his mobility back.
This care home just isn’t set up for this and the only way they are allowed to get Jack out of bed is with a hoist. Then it’s limited to 2-3 times a week for a couple of hours at a time. He needs to be out of bed daily and the chance to live a fuller and more active life. He can’t just be left in bed virtually 24/7. It’s awful. I am beside myself.
Roger went to his follow up appointment with the Charing Cross Neurologist and he has said he will write to the new GP recommending Jack for somewhere with more rehab and we hope and pray this is actioned very very soon.
You won’t believe - or maybe you will if you’ve been in this situation yourself - how angry and frustrated I have been the last two months.
The glow of Jack getting out of hospital and being medical stable vanished as soon as the truth of the situation at the care home dawned.
Keeping Jack positive, buoyant and as active as possible - as well as out of that care home ASAP - are our number one priorities.
Getting the “do not resuscitate” off his file - that was put in place during Covid - is my most recent victory. At the very least - if he does get ill again we know he will actually be given a chance....
Keep Jack in your hearts - your support is everything for him - and us
Helen Mead 17/11/21
I'm in tears reading this, it's so sad.
There's some photos in the link below too or maybe someone can post those here.
Thanks
Tony
https://www.gofundme.com/f/help-jack-baron-recover-from-vasculitis?viewupdates=1&rcid=r01-163714914229-ca3c3ca838bf40ca&utm_medium=email&utm_source=customer&utm_campaign=p_email+1137-update-supporters-v5b
Yesterday by Helen Mead, Beneficiary
- Here’s Jack on his birthday at Charing Cross Hospital in August
- Roger in the garden with Jack at the care home on his first day outside in 11 months in September
- And myself and Paul doing some exercises with him last month
Yesterday by Helen Mead, Beneficiary
Hi Everyone and thanks for your continued support - I can’t believe it’s three months since my last update - so much has happened and there is so much to share and do.
Firstly I want to say another thank you! It was unbelievably lovely to find so many cards and gifts for Jack when I spent the day with him on his birthday in August. I brought cake - a huge chocolate mousse one from Paul’s -that fed the rest of the ward and staff- and coffee of course, and he had lots of FaceTime calls with friends before we finished everything off with his favourite Honest Burger - courtesy of Alex at the Hammersmith Branch - who was taking Jack a cheeseburger meal weekly for all of the time he was able eat one! One of Jack’s angels - Alex is an amazing guy!
At the time Jack was having long term
treatment - in an acute medical ward- as he wasn’t strong enough for rehab - with a cocktail of antibiotics for his chest - the site of multiple infections since before and after he contracted Covid in the hospital earlier this year.
The best news is that just within the month Jack was medically stable for the first time since his admission -and as soon as he was out of danger he was transferred out of hospital to a care home.
Moved mid-September- Roger and I were able to take Jack outside in his wheelchair and sit in the garden - where he had the sun on his skin for the first time in over 11 months.
You can’t believe what an amazing moment this was - I felt like we’d made it too the top of Everest!
Jack basked in the sun! I was concerned that after that long time inside he’d react like a vampire and want the shade! He loved it and was able to have lunch outside too.
I’d like to say he had fresh air too- but we were in Acton- but the sky was blue, there were flowers and trees and we could pretend to be wherever we wanted to be.
It’s still a huge improvement on the recycled air of a hospital ward.
After a big chat about his time at the Isle of Wight festival when he was 16 and saw Jimi Hendrix it was just heartbreaking when we had to leave and bring him back inside - where he viewed the other residents in the care home lounge with much curiosity- not quite sure where or why he was keeping such company. This home is very much set up for end of life and dementia care. Especially a strange juxtaposition after the memories of the festival.
Back in his room we left him happily watching the new BBC Nirvana documentary featuring lots of friends and colleagues over the years. It’s so good that through the iPad we are able to keep him connected to the world he knew so well and loves so much.
Although stable he still requires 24 hour medical care and although the ward manager at Charing Cross Hospital said the nursing home shouldn’t be seen as a “final destination” (he will be reassessed after 6-8 weeks to make sure it best meets his needs - which is a process that is happening as I write).
It is no doubt preferable that he is out of hospital and has his own room with a garden view - and I hate to say it....
But here there is a distinct lack of the care he saw in hospital - despite being assured of the contrary there are no provisions for rehab or physio - and the staff unfortunately are unable to even keep his iPad charged or at times even know how to plug it in!
This is a huge blow to our expectations and hopes for Jack’s trajectory for recovery and we fail to see how he will ever get out of bed on his own again unless these opportunities are provided. Every day is critical.
We are determined that Jack isn’t allowed to fall through the cracks in the system and gets the care he needs and has the right too!
We have asked his new GP at the centre to refer him for physio and have been told it could be up to 8 weeks until he is even assessed for this and then it would only be weekly sessions. This has been and gone and we are still waiting for it too happen - alongside him being referred to an occupational therapist and social worker.
I have brought in a private physio who has been working with him 2-3 times a week so his body doesn’t continue to decondition anymore; and a friend and colleague, Paul, who is also a personal trainer has also donated his time two Saturday mornings to do some exercises with him.
We are desperate to get Jack out of this home and somewhere more appropriate for his needs ASAP. Ideally he would be having physio rehab daily - even twice a day. He has the strength and the ability - he just needs the guidance to get his mobility back.
This care home just isn’t set up for this and the only way they are allowed to get Jack out of bed is with a hoist. Then it’s limited to 2-3 times a week for a couple of hours at a time. He needs to be out of bed daily and the chance to live a fuller and more active life. He can’t just be left in bed virtually 24/7. It’s awful. I am beside myself.
Roger went to his follow up appointment with the Charing Cross Neurologist and he has said he will write to the new GP recommending Jack for somewhere with more rehab and we hope and pray this is actioned very very soon.
You won’t believe - or maybe you will if you’ve been in this situation yourself - how angry and frustrated I have been the last two months.
The glow of Jack getting out of hospital and being medical stable vanished as soon as the truth of the situation at the care home dawned.
Keeping Jack positive, buoyant and as active as possible - as well as out of that care home ASAP - are our number one priorities.
Getting the “do not resuscitate” off his file - that was put in place during Covid - is my most recent victory. At the very least - if he does get ill again we know he will actually be given a chance....
Keep Jack in your hearts - your support is everything for him - and us
Helen Mead 17/11/21
Somewhere in Acton (South London) is all she says about where jack is now, there can't be many care homes there I would imagine?
Possibly this one
https://www.autumna.co.uk/providers/1817-acton-care-centre/
cutting42
Arrived at B4 Hacker Ergo
That was a tough read, so positive at first and then so sad. I am really surprised as we are dealing with my FIL at a dementia care home currently and he needs a bed hoist to get out of bed as well and the care home could not be any different. Totally supportive and helpful to get him as much quality of life as well. It is a local council funded place as well although a Bupa owned home. They seriously need to move Jack.
robs
should know how this works by no
Crap -that is awful. I saw the update yesterday and saw the photos and thought what great news... he's out of hospital and looking well.
But I didn't see the other update below the photos as twotone pasted above.
Hope that the 'reassessment' brings a positive change, but with what is happening in the care system right now it's very much hope over reality I fear. Crap.
Thoughts are with Jack, and Helen.
But I didn't see the other update below the photos as twotone pasted above.
Hope that the 'reassessment' brings a positive change, but with what is happening in the care system right now it's very much hope over reality I fear. Crap.
Thoughts are with Jack, and Helen.
paulfromcamden
Baffled
Poor sod. So cruel that because his condition has improved he's transferred to somewhere that's effectively end of life care. It can't be doing much for his state of mind.
Sending positive thoughts and hoping things improve soon. What a star Helen is.
Sending positive thoughts and hoping things improve soon. What a star Helen is.
gavreid
Pretty Words...
Lovely thought Hook. All the very best Jack.