Hi, my name is LESLEYRHIND55!

LESLEYRHIND55

Hello everyone .

I wanted to connect with you because I am so disappointed and more accurate one **** off sister to my younger , only sibling called Gary . Gary died on February the 8th 2025 . He was terminally diagnosed a prior to his 50th birthday with a rare form of PAH ( Pulmonary Arterial Hypertension ) as well as excruciating Arthritis conditions . The DWP are responsible for insisting my brother gets sick lines from his GP and jump through legislation hoops for months whilst he was medically Disabled which caused him serious mental health issues. He had to come to terms with being told he would die and the condo on could not be reversed or that his heart would survive . No surgical intervention for his deteriorating Lung or Heart could be performed . He was also called to opt in or out for Resuscitation which must have been so very frightening for Gary .
During the 4 years prior to the devastating death of my sorely missed brother , the DWP kept him waiting a year for the second part of his Mobility component of PIP .
Meanwhile my brother was kept waiting and severely stress , anxious and mentally far too fatigued to want to chase this up constantly as well as waiting in a queue for an hour or more at any given phone call to enquire when his deserved mobility money was processed yet ? Gary was on Oxygen Therapy 24/7 365 for hours daily . 20 medical tablets per day kept him alive for a period of time .
He was made to feel like a Burden who was not important .
A Terminal dying human who has cognitive and physical excruciating pain to endure should not have to wait . Time is not something they have and are scared .
Unforgotten and never will I forgive the DWP / Social Security / Social Care or the GP practice that were an addition to more anxiety , depression and adverse stress Gary suffered with at the hands of Nitwits .

Bluebell21

Hello @LESLEYRHIND55 welcome to the Community. I am so sorry for your loss.

My daughter had PAH (Pulmonary Arterial Hypertension) so I know what a devastating disease it is. She was 22 years old when she was diagnosed. She had to use a wheelchair because although she could walk she could not breathe and walk and she also was on 24 hour oxygen.

She had a line in her neck where she was on 24 hour medication which we made up every day. It was delivered once a month by the hospital. She also took oral medication.

Because it is such a rare disease there are only 8 specialist centres in the UK that treat it so we had to travel.

She did eventually get a double lung transplant but she really needed a heart as well but she could not wait any longer.

She got one good year after the transplant where she did not need the oxygen or the wheelchair but then she rejected and died.

Part of the problem is very few people have heard of PAH even our GP had to look it up and we were giving him information. He was very good though.

I managed to shield my daughter as much as possible from the DWP but we had to fight for everything.

Sometimes with looking after her and the DWP I would be on my knees, but never gave up.

I am so very sorry you have had to go through this as I think everyone has a right to as good a life as they can and should not have to fight so hard.

Please take care of yourself and if you would like to discuss further just ask.

Adrian_Scope

I’m really sorry to read about Gary. Thank you for talking about him so openly. It’s clear how much he meant to you, and how hard those years were. What you describe sounds exhausting and deeply unfair. Like Santosha says, what you've told us is heart-breaking and I can certainly understand why there’s so much anger mixed in with the grief. I've seen first-hand the devastation poor end of life care can bring, so I just want you to know that you’re very welcome to keep talking, whether about Gary, about how you’re feeling now, or anything at all.

Bluebell, thank you for sharing your daughter’s story. I’m so sorry for your loss too. I can't imagine how it feels to lose a child and thank you for sharing something so personal. I know your words will mean a great deal.