Avice re: changing consultant/hospital?
Hi
Can anyone advise us? I am only back in Ireland for 3 years from the UK, and don't understand the complexities of the health service, referrals etc but as a family we are at our limit in terms of disatisfaction.
My Dad has small cell lung cancer being "maintained" by tarceva.
He is being treated at a Regional Hospital but I live in Dublin.
We have had several minor concerns throughout the last 18 months regarding aspects of his treatment, like cancelled appointments or him going to appts, very sick from chemo & having to wait up to 3 hours to see who he was supposed to see.
He is now very depressed, crying a lot, wont eat/wash, very very weak, wheezing after walking 10-15 feet. I have got him admitted twice in the past 2 months (through fighting to get him a bed) but each time I go back to work he is invariably discharged. They say he is physically ok but I can clearly see he isn't. W have tried 4 times to get an appt with his consultant to talk to them but cant get past the secretary.
We now want him to get treated in Dublin. Whats the process we have to go through? He is a private patient.
Please understand we know he is terminally ill, its not a denial thing, but he is being treated with such contempt currently & we want him to be treated with the respect he deserves & have his last few months be as peaceful & stress free as possible. As an example I contactedthem last tuesday( and every day since) to beg to see someone as he was refusing to eat, couldn't walk and was in great distress & they have yet to get him an appointment.
Any advice gratefully recieved.
Orla
Comments
Hi....no we dont have Marie Curie unfortunately. We do have Cancer society nurses for end life but The county he is in isn't covered!!!
Thanks for your good wishes, we are seeing the team next Fri so I hope to be very clear at that point about what we do & do not want, otherwise it will be a formal complaint. We asked for emergency help a week ago today & the best they offered was 7th August. He has had such direspectful experiences throughout treatment & I'm adamant it shouldn't happen to anyone else.
Take care & thanks again.
Orla
Hi Orla,
I am so sorry to hear of the lack of respect and dignity being offered to your Dad by his health care provider at this time.
Have you contacted the Irish Cancer Helpline to see if they can offer some assistance or advice? Or help find a consultant or hospital?
I think if your Dad wishes to change consultant/hospital, then he will need a referral letter for the new consultant and a copy of his records from his current hospital. I think he should be able to get his records by contacting the relevant person in the hospital and signing a Freedom of Information form??? I'm sorry but I don't know what else is involved (if anything) for changing.
I hope he gets some improvement in care soon.
Regards,
Flo.
Does your Dad live far from Dublin??? Would it involve a lot of travelling to move him under the care of a hospital there? Or mean he would miss out on visitors who would come to see him if he were closer to home? I know you want to get him the best care possible in his final months. It can be tricky to achieve a balance between this and respecting his wishes regarding where and how he would like to die. I only mention this because I had a friend who struggled with this issue in her husband's final months She often found it VERY difficult to stand back and respect his decisions. I hope you have an easier time in this regard.
hi orla, sorry to hear about the trouble youve had getting treatment for your poor dad. i dont know what healthcare in the south is like, but in the north we had the opposite problem with my dad. dad wanted to come home from hospital so he could spend whatever time he had left with his family but the hospital fought us and in the end we had to practically fight them to bring him home. we had marie curie nurses caring for dad and if they are available in the south then id advise you to look into getting them involved. they came to the house and sat with dad and any meds he needed they were able to give him. they were also a great support for our family if we had questions or just wanted someone to talk to. when dad passed away they sat at his bedside and said prayers for him and cried like they were a part of our family. they genuinely cared. i know this is a very distressing time for you as ive been where you are, you are going to need support too so please dont be afraid to ask for it. i wish i could offer you some better advice but as im not from the south i dont know what type of care is available for your dad. i wish you and your family the best and hope you get the help your dad deserves. trisha