Who to turn to next?

User

Posted 06 Apr 2015 at 16:46

Dear all,

My dad has been having Chemo since November 2014 and had seen an small improvement in his PSA levels and reduction in pain until he got a chest infection and pneumonia 2 weeks ago.

He has been through A&E twice. He was admitted to a ward for less than 24 hours the first time and then sent home with oral antibiotics, the second time he couldn't even get a bed and was sent home with a different oral antibiotic.

His health is declining in a big way; weight loss, terrible pain (chest, shoulder, leg), no appetite etc. The local hospice don't seem willing to help us even though we are trying to avert an 'emergency' admission to hospital by getting him some more anti-biotics and a bed so as he can be observed. Instead the hospice suggest yet another increase in his patches. The on-call doctor has just prescribed a random antibiotic as he doesn't have any of the details from my dads previous medical history or the cultures which have been taken.

Is it normal to be treated this way? All we want is for someone to care, and a medical professional to 'share the load'. As a family we are at breaking point, seeing a loved one treated this way is heartbreaking.

He has missed his Chemo twice as he isn't well enough and his appointment with the consultant is weeks away still.

Does anyone have any advice? I have lost all faith in humanity at this point. If I start to cry I'm afraid I'll never stop :(

User

Posted 06 Apr 2015 at 19:30

Hello Emma,
I'm sorry about your Dad's situation, and not sure how I can help except to be a shoulder!

In his medical team you should have a designated nurse?, have you tried contacting them? I'm surprised that the Hospice aren't helping as that is what they are for, so have you tried phoning Macmillan nurses for advice? No it is not normal to be treated this way, but it does happen.

Your Profile doesn't say much, could you elaborate a bit please.

Blessings,
Chris.

User

Posted 06 Apr 2015 at 20:16

Can you try and get through to his Consultants secretary in the morning?

I have found that these secretaries can be key in getting things done.

It should be back to normal business for everyone tomorrow - so I hope that you can get somewhere.

You are right - you need a professional to 'manage' the situation for you.

I feel for you. Some of us have been there, feeling neglected and alone within the system (or lack of it!) It should never happen but it does.

I am thinking of you.

Alison

User

Posted 06 Apr 2015 at 21:37

Oh Emma
This is appalling, and not normal, but sometimes things do go like this and it is just dreadful for the family.

You have tried the hospice, I almost cannot believe that they have not tried to help you, that's almost worse than the oncology team. You seem stuck between being managed by a palliative care team and the ordinary oncology team. It strikes me that you do need palliative care and the support of this team. I wonder if you can speak to someone in either oncology or the chemo ward and ask directly for help.

Also could you ring the nurses at the charity here, they may be ble to give you some sensible advice.

I know it won't help. But I'm sending you a virtual hug, please let us know how you get on.

Lots of love
Allison xxx

User

Posted 06 Apr 2015 at 21:55

Hi Emma,
Can you just confirm whether your dad is in England?

I checked back to your posts from last October and it does seem that you are having to fight all the way. It is important to be clear about the different people involved and what they can do though.

Dad should have a nurse specialist linked to either the urology or oncology department at the hospital - you should ring him/her when you are concerned about treatments or to pass on information that you want the onco to know about. The McMillan nurse is different - hopefully Macmillan or Maggie's nurses are available in your area and are usually a fantastic support to the patient and his family.

As Alison says, the onco's secretary is the person that can get you an earlier appointment - definitely worth ringing her tomorrow.

I am surprised at the hospice not helping - have you actually had dad referred to the hospice by the GP? Generally, they must have the GP referral to be able to get involved.

Has there been any discussion with dad about what he would like to happen when the treatments stop working? As far as you know, has he made any instructions to the health professionals about things like whether he would like to be at home, in hospital or in a hospice towards the end of his days? Has he perhaps already discussed with his doctors that he would not want treatment if he got pneumonia? As dad is only a young man himself, I am guessing that you are maybe in your early twenties - it might be that your parents are trying to protect you. On the other hand, being young and feisty means you might be exactly the person to ring everyone tomorrow and pester until you get either some advice or an early appointment or an explanation that helps you understand their thinking.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 06 Apr 2015 at 22:37

Emma
I think all the replies you have had so far have pointed you in the right direction with regards to clinical nurse, consultant's secretary etc. I work for a hospice and Lyn is absolutely right we cannot take patient referrals straight from the patient or a member of their family. We have to have the referral either from the GP surgery, Macmillan (or similar) nurses usually based at the hospital. The hospice really should be able to help with pain management and any other palliative care needs however they are not all equipped to deal with giving specialist treatments or intense urgent care. Often that has to be done at the hospital. It can become very complicated as moving patients between places can be really traumatic and very hard for some patients and indeed their families.

The first and most critical step is to get someone to take notice of you so I would opt for calling the Consultant's secretary first thing in the morning. Do not be afraid to let her know how upset and anxious you all are.

What you are experiencing is not the normal and it is definitely not acceptable
I wish you all the very best
xx
Mo

User

Posted 06 Apr 2015 at 23:03

Oh Emma,

I can only add my voice to the advice that you have already been given , try everything that Allison, Lyn and Mandy have advised. This situation is certainly not acceptable and there will be help out there it is a case sometimes of knowing who and where to ask.

I hope that you do get something sorted for your Dad soon.

I will be thinking of you.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 06 Apr 2015 at 23:09

hi Ema
sorry to read about your Dad do you stay in Scotland as the lack of support sounds like it. I remember asking Mo once what she ment by the team Mick had.
I am glad that you have put these problems that you are having on the forum they need to be highlighted.
I was stupid never said much about things that were going on so it was a hard and lonely journey for us.
When Eric passed away I contacted the hospice to tell them what happened they said oh okay then bye.
I would hate to think that anyother family should go through this added stress that it causes..
I am sure you will take up the fight for your Dad with the help from the forum.
sending best wishes to you and your family.
Carol x

User

Posted 07 Apr 2015 at 09:39

Hi Emma,

Similarly had lots of problems with treatment for my partner so appreciate your concerns. Someone in the medical team needs to take responsibility, have they had a care plan or complex case meeting to discuss all aspects of care and involved you ? Sometimes departments pass the buck and patients fall between several of them and no one seems to take the lead. Specialist allocated nurse is a good idea, we eventually had one from the hospice, instigated by me I'm afraid but she was excellent and did a lot of chasing up. Sounds like palliative care imput is vital in view of pain. Good idea to speak to secretary, a good one is invaluable ! Just to let you know I am thinking of you, many of us have been in the place where you find yourself !

Fiona x

User

Posted 07 Apr 2015 at 18:52

Hi Emma

This is nothing short of appalling. I hope you get this sorted very quickly. It really looks as though a week in hospital is the very least he needs.

Paul

Stay Calm And Carry On.

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