NGNPUK who are we and why are we...
Hello, I have been asked on many occasions to share my family’s story and have always shied away from it as I don’t want to make this all about us. Many families’ lose loved ones however we were inspired to do something from what happened to my dad so here goes.
This is my dad David Jarrett; he was quite well known around this area always happy to help people out, was an active fundraiser with the rotary club and was well known for his love of fishing ;-). He also had a joinery business and was very handy at fixing most things. He was very fit and active and although 75 years young always on the go and full of life.
Sadly dad was diagnosed with cancer around July 2013; he was expected to recover after an operation and treatment. Unfortunately this was not to be the case; his cancer was a rare and aggressive form. He went in to have his operation to remove the tumour but when they operated they realised it had already spread and nothing was done. Dad was sent home and left. We were told treatment would follow but by the time treatment was offered it was all too little too late and within weeks dad was in bed too weak to get up.
We faced many battles in his care, needing a hospital bed at home to care for him properly and not getting one and way too many others to list but one that really stuck was when he was in pain in the last few day of his life. Whilst dad was ill he never complained, always said he was a little uncomfortable but not in pain. I’m not saying he was a super human but I would say he most definitely had a high pain threshold so when in the last few days of his life he started to get pain we knew it must be have been bad.
We also always assumed that pain would be managed after all no one needs to be in unnecessary pain, especially in this day and age. We had to wait for the nurses to come who then had to wait for a doctor to come to administer pain relief by countless injections, sometimes these worked sometimes they didn’t and he would need more. If they worked the pain started again after a few hours the process started again.
By this time dad was unable to really speak and the nursing staff could tell by how he was acting that he was very much in pain. The local GP came and said dad needed a syringe driver to give him a constant flow of pain relief to make him comfortable. We waited and were told by the lovely nurse that they had tried everywhere even Sue Ryder to get dad a driver and they were all in use. It was heart-breaking. To think that my lovely dad was laying there in pain for no real reason, these machines were manufactured and out there but we couldn’t get our hands on one for him. My dad was dying and he couldn’t get what he needed, I couldn’t believe it.
It was a few days before Christmas 2013 and we were told we were not alone waiting for one. 24 hours passed and we finally got one. Someone else had lost their loved one and it was taken straight off them and given to us. I cannot express the difference this driver made to dad and to us. We went from most definitely sending dad to a hospice to keeping him at home as he was finally out of pain and much more comfortable.
We still had one more hurdle as the GP had already got dad a bed at Thorpe Hall but after him doing so well now he had the driver we wanted to keep him at home to die. After a long chat with the GP we made the heart-breaking decision for him to go there. That was one of the hardest decisions my mum and I have ever had to make but it was most defiantly the best one.
The drive there was awful following the ambulance knowing he wasn’t coming home ever again. As soon as we got to Thorpe Hall dads driver was taken off him and replaced by one they had at Thorpe Hall, the other one was rushed straight back out into the community for someone else. Taking dad to Thorpe Hall was the best decision we made and they truly were angels those 2/3 days were the best care he had received throughout his entire ordeal. We can never thank them enough for their care and making an awful time a little more bearable.
So that is our story in as much of a nutshell as I can give it.
We couldn’t help my dad but he wouldn’t have wanted to die in vain he would want some good to come from his death. I asked the consultants at the hospice if they would use his notes to help others as he had this rare type the answer was no, they don’t keep notes they just don’t do it! I couldn’t believe it; surely they would know not to treat the next person with this type in the same way as dad but no. There was nothing I could do about that unfortunately I’d hit a brick wall. I wanted to do something because I know that’s what my dad would have wanted; he would have wanted lessons to be learned and changes to be made.
Palliative care really can be hit and miss unfortunately and you can so easily slip through the net and get left which is very scary. It’s easy to not know exactly what’s out there and what help there is but under no circumstances should people be dying in pain I had no idea about syringe drivers before all this and why would I? It’s not until someone you love needs one you would really know they exist.
After a lot of ground work myself (Louise Nicholls), my friend Samantha Carter and my husband Lee started researching these machines found out there were only 2 in the community for use in Whittlesey, Thorney and Eye that’s a lot of people! No wonder we couldn’t get one. That’s when NPNGUK was born. We decided it was time to do something about it.
Our aim is to supply at least one more driver per year to the community nursing team who cover our local area. We have been fundraising for nearly a year now and have managed to supply 2 more drivers to the area so far. These machines cost just under £1400 each, we have negotiated a fixed price with the medical company for the next few years and this came in handy when we purchased driver number 2 as the price had already increased.
The NHS only uses one type the T34 and the drugs are put into it and then the whole unit is placed in a clear lock box which has a key and it slowly releases this to keep people pain free. These machines have an average lifespan of about 7 years however as people don’t always know their value we have heard from the nursing team of sad cases where people have thrown them away once someone has died and a case where someone got in the bath with one and unfortunately they are not water proof so that one was lost. Also one was placed in a sharps bin and incinerated!
These are just some of the stories and things we are up against. We have a long way to go but we really do need to spread the word, to make people aware of what they are and what they cost. I have had some conversations with some nursing staff and they were not even aware of the cost like me they thought they probably cost about £100 so that is something we want to try and change. We have a long way to go.
60 seconds in pain is a minute too long. Imagine 24 hours of it.
Thanks for reading.
Lou
This is my dad David Jarrett; he was quite well known around this area always happy to help people out, was an active fundraiser with the rotary club and was well known for his love of fishing ;-). He also had a joinery business and was very handy at fixing most things. He was very fit and active and although 75 years young always on the go and full of life.
Sadly dad was diagnosed with cancer around July 2013; he was expected to recover after an operation and treatment. Unfortunately this was not to be the case; his cancer was a rare and aggressive form. He went in to have his operation to remove the tumour but when they operated they realised it had already spread and nothing was done. Dad was sent home and left. We were told treatment would follow but by the time treatment was offered it was all too little too late and within weeks dad was in bed too weak to get up.
We faced many battles in his care, needing a hospital bed at home to care for him properly and not getting one and way too many others to list but one that really stuck was when he was in pain in the last few day of his life. Whilst dad was ill he never complained, always said he was a little uncomfortable but not in pain. I’m not saying he was a super human but I would say he most definitely had a high pain threshold so when in the last few days of his life he started to get pain we knew it must be have been bad.
We also always assumed that pain would be managed after all no one needs to be in unnecessary pain, especially in this day and age. We had to wait for the nurses to come who then had to wait for a doctor to come to administer pain relief by countless injections, sometimes these worked sometimes they didn’t and he would need more. If they worked the pain started again after a few hours the process started again.
By this time dad was unable to really speak and the nursing staff could tell by how he was acting that he was very much in pain. The local GP came and said dad needed a syringe driver to give him a constant flow of pain relief to make him comfortable. We waited and were told by the lovely nurse that they had tried everywhere even Sue Ryder to get dad a driver and they were all in use. It was heart-breaking. To think that my lovely dad was laying there in pain for no real reason, these machines were manufactured and out there but we couldn’t get our hands on one for him. My dad was dying and he couldn’t get what he needed, I couldn’t believe it.
It was a few days before Christmas 2013 and we were told we were not alone waiting for one. 24 hours passed and we finally got one. Someone else had lost their loved one and it was taken straight off them and given to us. I cannot express the difference this driver made to dad and to us. We went from most definitely sending dad to a hospice to keeping him at home as he was finally out of pain and much more comfortable.
We still had one more hurdle as the GP had already got dad a bed at Thorpe Hall but after him doing so well now he had the driver we wanted to keep him at home to die. After a long chat with the GP we made the heart-breaking decision for him to go there. That was one of the hardest decisions my mum and I have ever had to make but it was most defiantly the best one.
The drive there was awful following the ambulance knowing he wasn’t coming home ever again. As soon as we got to Thorpe Hall dads driver was taken off him and replaced by one they had at Thorpe Hall, the other one was rushed straight back out into the community for someone else. Taking dad to Thorpe Hall was the best decision we made and they truly were angels those 2/3 days were the best care he had received throughout his entire ordeal. We can never thank them enough for their care and making an awful time a little more bearable.
So that is our story in as much of a nutshell as I can give it.
We couldn’t help my dad but he wouldn’t have wanted to die in vain he would want some good to come from his death. I asked the consultants at the hospice if they would use his notes to help others as he had this rare type the answer was no, they don’t keep notes they just don’t do it! I couldn’t believe it; surely they would know not to treat the next person with this type in the same way as dad but no. There was nothing I could do about that unfortunately I’d hit a brick wall. I wanted to do something because I know that’s what my dad would have wanted; he would have wanted lessons to be learned and changes to be made.
Palliative care really can be hit and miss unfortunately and you can so easily slip through the net and get left which is very scary. It’s easy to not know exactly what’s out there and what help there is but under no circumstances should people be dying in pain I had no idea about syringe drivers before all this and why would I? It’s not until someone you love needs one you would really know they exist.
After a lot of ground work myself (Louise Nicholls), my friend Samantha Carter and my husband Lee started researching these machines found out there were only 2 in the community for use in Whittlesey, Thorney and Eye that’s a lot of people! No wonder we couldn’t get one. That’s when NPNGUK was born. We decided it was time to do something about it.
Our aim is to supply at least one more driver per year to the community nursing team who cover our local area. We have been fundraising for nearly a year now and have managed to supply 2 more drivers to the area so far. These machines cost just under £1400 each, we have negotiated a fixed price with the medical company for the next few years and this came in handy when we purchased driver number 2 as the price had already increased.
The NHS only uses one type the T34 and the drugs are put into it and then the whole unit is placed in a clear lock box which has a key and it slowly releases this to keep people pain free. These machines have an average lifespan of about 7 years however as people don’t always know their value we have heard from the nursing team of sad cases where people have thrown them away once someone has died and a case where someone got in the bath with one and unfortunately they are not water proof so that one was lost. Also one was placed in a sharps bin and incinerated!
These are just some of the stories and things we are up against. We have a long way to go but we really do need to spread the word, to make people aware of what they are and what they cost. I have had some conversations with some nursing staff and they were not even aware of the cost like me they thought they probably cost about £100 so that is something we want to try and change. We have a long way to go.
60 seconds in pain is a minute too long. Imagine 24 hours of it.
Thanks for reading.
Lou
