Social issue rather than a health service issue

[totallyconfused]

I read someone on here say that. I wish the doctors had said that the day my mother was diagnosed. It would be great if patients were automatically set up with public nurses, help etc asap so the person gets used to it and they see the patient progress/keep an eye on them. It would also be great to have bloods done at home rather than trying to make it to GP, especially in later stages.This wasn't the case for our mother. We do our best but its hard to always stay on top of things. Maybe we are just stupid or whatever but it would have been helpful for someone to say this is who you need to call, heres a list of services you need for your mother and any legal/financial issues.

 

[marionq]

I don t know where you are but in Scotland that is exactly what should happen. You are diagnosed, prescribed medication, or not. A CPN comes regularly to your home if medication is to be regulated and a Link worker comes if you have no medical needs but offers you follow up advice. This would include information about POA, AA, council tax reduction, local services, and anything else you ask.

I started keeping a diary for all the appointments we had as well as the behaviours which knocked me for six in the early stages. At the back I kept a list of all the people we came in contact with and there were many. I was overwhelmed. Names, phone numbers, job titles, organisation.

Months and years later I was able to get the exact person I was looking for without getting the run around. It was the best idea I had in this journey. It meant I could access information so much more easily. Get into the habit of asking for business cards or just writing down details about theperson you're speaking to.

With hindsight I can see that many of the pieces of advice I was given and didn't take up at the time were in fact very useful.

 

[Blondee]

Hi @totallyconfused
Don’t for a minute think you’re stupid. This is a minefield and there is so much to think about and to take in.
Like @marionq I’m in Scotland and the link worker is a great start. But that only lasts a year after diagnosis and in my experience there are many issues arise after that first year that would never occur to you. In an ideal world when someone is diagnosed then a named worker would be allocated for everyone and stay with them throughout the progress of their illness.
Good luck and keep posting

 

[totallyconfused]

I don t know where you are but in Scotland that is exactly what should happen. You are diagnosed, prescribed medication, or not. A CPN comes regularly to your home if medication is to be regulated and a Link worker comes if you have no medical needs but offers you follow up advice. This would include information about POA, AA, council tax reduction, local services, and anything else you ask.

I started keeping a diary for all the appointments we had as well as the behaviours which knocked me for six in the early stages. At the back I kept a list of all the people we came in contact with and there were many. I was overwhelmed. Names, phone numbers, job titles, organisation.

Months and years later I was able to get the exact person I was looking for without getting the run around. It was the best idea I had in this journey. It meant I could access information so much more easily. Get into the habit of asking for business cards or just writing down details about theperson you're speaking to.

With hindsight I can see that many of the pieces of advice I was given and didn't take up at the time were in fact very useful.

In Ireland, we were told nothing. She was diagnosed, given meds and we quickly led out of the room as it was a busy day. Appointment with consultant 6 months later, he was called away before her appointment, she saw another Junior doc who we found out 6 months later from the consultant that the medication he said wouldn't work, might have actually have helped her.

Looking back, I should have demanded more answers from both. There should be a system though that automatically sets you up with the public nurse or someone. Someone that can point you in the right direction. Its unfortunate that waiting times are so long. My mother was waiting a year to see the consultant. She wasn't the same person. A year is a long time.